stennisfoundation

Leukodystrophies Awareness Ribbon Magnets

2010-09-10T17:43:00.005-05:00

These fabulous magnets for Leukodystrophies Awareness are on their way! We should have them in within 2 weeks! You can get them for $1.25 each, plus postage. Please let us know how many you would like. When they arrive, we will figure postage and let you know.

Thanks for your support! Because of your generosity, we are "One Step Closer to a Cure!"

"It's the L.A.W.™" Leukodystrophies Awareness Month & World Leukodystrophies Day

2010-08-08T15:28:00.006-05:00

September is Leukodystrophies Awareness Month. Wear navy blue all month long. Tie navy blue ribbons on your car antennas; tie them on your trees. Encourage all your friends and family members to do the same! People will notice, and when they ask about it, we can tell them all about Leukodystrophies!

Saturday, September 25, 2010 -- the last Saturday in September -- is World Leukodystrophies Day. The Stennis Foundation is sponsoring the "It's the L.A.W.™" Campaign -- the Leukodystrophies Awareness Walk. The L.A.W. is 10 miles in length, and it's wherever you are. Map your course, and take off walking. Pledge sheets are available for download here. Even if you do not walk that day, please consider obtaining sponsors for this event!

We also have these pin-on badges for only $2 each (includes shipping in the US. Outside the US, please contact us for shipping information). You can download an order form here and send in with a check, or you can use the "Donate" link, and include your information in the space provided.

Think of all the awareness we will raise!

We have shirts left!

2010-07-30T16:16:00.001-05:00

We have shirts from our Walks! Shirts are $12 each, and includes shipping. US only. We do not have any 2X left. We have S, M, L, XL in adults, and S, M, L in childrens. To get shirts, just use the Donate link at http://www.stennisfoundation.org/web, and when you get to the PayPal page, you can enter any instructions. You can also order by sending a check to The Stennis Foundation, PO Box 30065, Amarillo, TX 79120.

Sign up today!

2010-07-15T11:20:00.000-05:00

If you have not yet registered for the "One Step Closer" Walk for Leukodystrophy in Allen, TX, please take a moment and do so today!! This will be a great event. We will also have a ticket auction, and a bone marrow drive!! Come be a part!! Sign up today at http://www.stennisfoundation.org/web

Also, the Southfork Hotel is our hotel sponsor for the Walk! If you are coming from out of town, please do not reserve your room online, but call the Southfork Hotel directly, 866-665-2680 or 972-578-8555, and tell them you will be there for the Walk.

Please pass this information along to everyone you know! The success of the Walk depends on everyone working together!!

To our Texas Friends

2010-06-17T14:49:00.001-05:00

The next "One Step Closer" Walk for Leukodystrophy will be Saturday, July 24, 2010 in Allen, TX. Allen is in the North Dallas area, and we would love for all of our Texas friends to come help us honor Nathan Fleming, Zach Harrison, Greyson Morris, Maddy Schmiedel, Jansen Scott, Deborah Lloyd, Christopher Benson, Cassidy Pearish, Ryan Scott, Chris Michael, Kaleb Pitchford, Nathan Kuai, and others who are or were affected by a Leukodystrophy.

Please plan a weekend trip to Dallas the weekend of July 24, and come walk with us on Saturday morning! The walk will be at Celebration Park (Angel Pkwy & Malone) in Allen. We will also have a "ticket auction" (you buy tickets and use them to bid on items), and a bone marrow drive (no one is giving bone marrow -- it's a recruitment for people to join the national bone marrow registry. Four cheek swabs is all it takes!).

Late registration and sign in begins at 9:00 a.m., and the walk begins at 10:00. Registration is $20 and includes a t-shirt. Online registration is open now at http://www.stennisfoundation.org/. Sign up today, and help us bring down these horrible diseases!

If you are not able to attend, please consider a donation to The Stennis Foundation to fund research and recruits to the bone marrow registry. You can give, or sponsor someone in this walk, online, at http://www.stennisfoundation.org/ (click on Donate).

Checks can be mailed to:
The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

Thanks for your time and support!!

Our Beautiful New Cookbook is here!

2010-01-03T15:49:00.003-06:00

Blue Ribbon Recipes, our beautiful new cookbook, is here! Close to 300 pages, close to 400 recipes, complete with photos of our Leukodystrophy loved ones on the cover, these books are amazing. If you have not ordered your copy yet, you can order today from The Stennis Foundation's website, and your book(s) will be shipped to you right away! Help us raise awareness of Leukodystrophies and funds for research! You will not be disappointed!

Blue Ribbon (as in Leukodystrophies Awareness) Recipes!

2009-10-10T11:38:00.000-05:00

Dear Friends,
We are putting together a cookbook, and we need your help! Actually, we need your recipes!

"Blue Ribbon Recipes" will be a collection of recipes from Leukodystrophy families and friends everywhere! If you have some favorites, please submit them to be included in this collection, being published by The Stennis Foundation. We will accept recipes through October 31, so please send all your favorites to stennisfoundation(at)stennisfoundation.org. If you would allow us to use a photo of your loved one on the cover, please send that, too!

We will have these ready in time for Christmas gifts! We are very excited about this project -- please send your recipes ASAP!

Thanks so much!

Send Flowers -- Help The Stennis Foundation!!

2008-12-14T11:12:00.002-06:00

If you are wanting to send holiday flowers (or any occasion: Birthday, Thinking of You, Sympathy), please go to our site! FlowerPetal.com has partnered with The Stennis Foundation, and we receive a percentage of the total proceeds.

So send flowers -- and help The Stennis Foundation!!

Go to stennisfoundation.flowerpetal.com to place your order!

Remember, you're helping us help others!

Send flowers -- help The Stennis Foundation!

stennisfoundation.flowerpetal.com

Something new!

2008-12-07T21:57:00.001-06:00

The Stennis Foundation has partnered with FlowerPetal.com, and each arrangement sent through our website will bring a 12% donation to The Stennis Foundation! Just go to stennisfoundation.flowerpetal.com, and have a look. With the holidays, you can send holiday arrangements; or birthday, thinking of you, sympathy, anniversary.....or any occasion, really!

Please pass this information along....and please, remember to use stennisfoundation.flowerpetal.com for all of your floral needs!!

Thanks so much!!

Happy Holidays!

This is quite cool!

2008-09-24T22:18:00.003-05:00

We have a "widget" on our MySpace page that you can copy the code for, and put on your page. It allows people to donate to The Stennis Foundation, straight from your site, using PayPal. I tried posting it here, but the preview said there was a problem displaying it here on this blog. Bummer. But you can put it on your site, or your MySpace, or [old] CaringBridge. I haven't checked to see if it works on Facebook, that will be next. So please, visit our MySpace: www.myspace.com/stennisfoundation, and get the Widget!

Because of your support, we are "One Step Closer to a Cure" for the Leukodystrophies.

Upcoming "One Step Closer" Walk for Leukodystrophy in MPLS!

2008-08-27T15:38:00.000-05:00

Please forward this information to anyone you may know in Minnesota. The Stennis Foundation is sponsoring a "One Step Closer" Walk for Leukodystrophy in Minneapolis on Sunday, September 7. The walk will be at Lake Nokomis, which is near the Minneapolis airport. Sign in and registration begins at 9:00, and the Walk begins at 10:00. Please register online at www.stennisfoundation.org. Registration is $20, which includes a t-shirt. Hope to see you there!

2nd Annual Cheezy Riders Invitational 9/21/08 Cape May, NJ

2008-08-27T15:37:00.001-05:00

Help Support The Stennis Foundation

2008-07-27T23:07:00.000-05:00

Come join my cause: The Stennis Foundation! You will be able to recruit friends, raise money, and add a profile badge to show your support!

One more new video on YouTube!

2008-06-19T23:25:00.000-05:00

New video posted, of the "One Step Closer" Walk for Leukodystrophy in Paris, TN. Check it out at: http://www.youtube.com/v/z028WVoiaq4.

It's awesome. I am forever grateful to the Madisons, and the city of Paris, for making this walk happen. It was amazing.

New Video on YouTube - One Step Closer Walk, Brick Twp, NJ

2008-06-15T23:18:00.002-05:00

Hi everyone, I have posted a new video on YouTube. It is of our Stennis Foundation "One Step Closer" Walk in Brick Twp, NJ, a couple of years ago. I am still waiting for pics of the "One Step Closer" Walk in Old Bridge, NJ....I have a few, but I am hoping for more. (hint hint....if any of you were at the Walk in Old Bridge, and took pics, please send them my way!).

I'm including a link to the video here. If you want to post the video on your site, please feel free. http://www.youtube.com/watch?v=1SNA_vsS2h8

Messages of Support for Augusto Odone

2008-06-01T15:06:00.002-05:00

Dear Friends,
A page has been set up on The Myelin Project's website for people to leave messages of support for Augusto Odone. If you would like to leave a message of support for him, you may do so here: www.myelin.org/en/testimonials/add.asp.

Thank you for your support!

Lorenzo - Now Free From ALD

2008-05-30T18:03:00.003-05:00

Fairfax VA.

5/30/08

Lorenzo Odone, whose story was told in the 1992 Hollywood movie "Lorenzo's Oil", starring Susan Sarandon and Nick Nolte, has died in Fairfax, VA, one day after his 30th birthday. Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) in 1984, aged 6. Doctors told his parents that the neurological disease would swiftly deprive him of all his faculties and lead to his death withing a maximum of two years.

Odone's parents, Augusto and Michaela, despite having no scientific background, decided to research the rare genetic disorder. Their struggle and ultimate triumph, when they found an oil that stopped the disease in its tracks and, in pre-symptomatic boys, prevented the onslaught of ALD, captivated director George Miller, who went on to make 'Happy Feet' and 'The Witches of Eastwick'. He turned the true life story into a film which won Susan Sarandon an Oscar nomination as Best Actress.

(Sarandon insisted on bringing Michaela Odone with her to the Oscar ceremonies).

The film met with criticism from the medical community, who condemned it for setting up false hopes in families of ALD sufferers. The Odones however were amply vindicated by a study published two years ago, which showed that Lorenzo's Oil did indeed stop ALD in pre-symptomatic boys.

The Odones also founded the Myelin Project, a mould-breaking medical research charity which as well as providing leadership in the search for a cure for ALD, also enabled families affected by the disease to meet directly with scientists working in the field. "Scientists should never forget that their mission is to relieve human suffering rather than win the Nobel prize" said Augusto Odone when founding the project.

In 1996, Phil Collins wrote the song "Lorenzo", based on lyrics written by Michaela.

Bedridden and unable to communicate from his seventh year, Lorenzo was kept at home by his parents. Nurses cared for him round the clock, as did his indefatigable parents. Lorenzo outlived his mother, who died of lung cancer in 2002. He is survived by his father, Augusto, his brother Francesco and sister Cristina.

ENDS

Happy Birthday, Lorenzo!

2008-05-29T09:22:00.003-05:00

To some, a young man turning 30 years old might not be such a big deal. But for Lorenzo Odone, this is a tremendous milestone.

The first five and a half years of his life, Lorenzo was an active boy who spoke three languages. He had lived in the Comoros Islands in East Africa for three years with his parents Augusto and Michaela. When Lorenzo was five, his teachers noticed behavioral changes and spoke with Augusto and Michaela about them. It was not long until Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) in 1984.

Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. People with ALD accumulate high levels of saturated, very long chain fatty acids (VLCFA) in the brain and adrenal cortex because they do not produce the enzyme that breaks down these fatty acids in the normal manner. The loss of myelin and the progressive dysfunction of the adrenal gland are the primary characteristics of ALD. ALD has two subtypes. The most common is the X-linked form (X-ALD), which involves an abnormal gene located on the X-chromosome. Women have two X-chromosomes and are the carriers of the disease, but since men only have one X-chromosome and lack the protective effect of the extra X-chromosome, they are more severely affected. Onset of X-ALD can occur in childhood or in adulthood. The childhood form is the most severe, with onset between ages 4 and 10. The most common symptoms are usually behavioral changes such as abnormal withdrawal or aggression, poor memory, and poor school performance. Other symptoms include visual loss, learning disabilities, seizures, poorly articulated speech, difficulty swallowing, deafness, disturbances of gait and coordination, fatigue, intermittent vomiting, increased skin pigmentation, and progressive dementia. In the milder adult-onset form, which typically begins between ages 21 and 35, symptoms may include progressive stiffness, weakness or paralysis of the lower limbs, and ataxia. Although adult-onset ALD progresses more slowly than the classic childhood form, it can also result in deterioration of brain function. A mild form of ALD is occasionally seen in women who are carriers of the disorder. Symptoms include progressive stiffness, weakness or paralysis of the lower limbs, ataxia, excessive muscle tone, mild peripheral neuropathy, and urinary problems (National Institute of Neurological Disorders and Stroke, 2007).

When Lorenzo was diagnosed with ALD, treatment options were very few. Lorenzo was already showing symptoms of the disease. Augusto and Michaela worked endlessly on trying different things that would help their son. Lorenzo was entered into a diet trial, which put him on a special diet restricting any foods that contained the Very Long Chain Fatty Acids C24-C26. This did not prove effective, so Lorenzo was entered into another trial that was a brutal process, a type of immunosuppressant therapy involving chemo, which also was ineffective.

Lorenzo’s father, Augusto, poured himself into finding a cure for Adrenoleukodystrophy. He determined that a combination of erucic acid from rapeseed oil and oleic acid from olive oil could combat the Very Long Chain Fatty Acids, and “Lorenzo’s Oil” was born. Lorenzo was put on this combination of rapeseed oil and oleic acid, and is still on this regimen to this day. Augusto credits Lorenzo’s health to “Lorenzo’s Oil.”

Today, Lorenzo is in many ways incapacitated. He is blind, but he can hear. He is aware of his surroundings. He blinks his eyes and makes purposeful sounds in efforts to communicate. He is always delighted by the presence of his big brother, Francesco. He enjoys being read to – novels are his favorite. He likes classical music, and enjoys being in the swimming pool. Besides long-time family friend, Oumari, who is involved in Lorenzo’s care, Lorenzo requires full time, around-the-clock nursing.

Augusto Odone is the founder of The Myelin Project, a nonprofit organization committed to eradicating demyelinating diseases such as Adrenoleukodystophy (and other Leukodystrophies) and Multiple Sclerosis.

For boys who are diagnosed with ALD, treatment with Lorenzo’s Oil and a bone marrow transplant could help to slow the progression of the disease. Ultimately, the goal is to determine these diseases at birth through Universal Newborn Screening, which the Myelin Project is wholeheartedly working on. The development of these tests is quite costly; and federal funding is limited. Donations are needed to continue developing these tests, so that children who are diagnosed with ALD or other demyelinating disorders, as Lorenzo was, are given a chance at life.

Happy Birthday, Lorenzo. And many more.

Donations may be made in honor or Lorenzo's Birthday at http://www.myelin.org/en/donations/add.asp

©2008, Trish Knight, The Stennis Foundation

Find Us On Facebook!

2008-05-25T17:52:00.001-05:00

You can find The Stennis Foundation on Facebook, by going to http://www.facebook.com/pages/The-Stennis-Foundation/32779457264

Click on "Become a Fan" on the upper right hand side!

Thanks!

Support The Stennis Foundation!

2008-04-26T17:52:00.000-05:00

We need everyone in New Jersey to come out and support The Stennis Foundation on Saturday, May 17, 2008, when a "One Step Closer" Walk for Leukodystrophy will be held! If you've never attended a "One Step Closer" Walk, you are missing a blessing!

This walk will be at Lombardi Field, at Old Bridge High School. Late registration will begin at 12:00, the 4-mile Walk will begin at 1:00. Registration fee is $10 per person, which includes a t-shirt. Online registration is open at www.stennisfoundation.org. You can even pay your registration fee online, using PayPal.

Don't delay! Sign up today! Go right now!

After you have signed up, tell all your friends and family members to sign up. Then get other friends, family, neighbors and coworkers to sign up and to sponsor you -- so much per mile, or for a flat rate.

With your help, we will be "One Step Closer to a Cure" for the Leukodystrophies! Please help us bring these diseases DOWN!

Here's the video from the Walk we had in Allen, Texas.

And here is a general information video, regarding The Stennis Foundation.

Thank you for supporting The Stennis Foundation!

Aldagen Announces Initiation of ALD-101 Phase III Trial

2008-04-17T14:48:00.000-05:00

Aldagen Announces Initiation of ALD-101 Phase III Trial for Improving Cord Blood Transplants in Pediatric Patients With Inherited Metabolic Diseases
Trial to Be Conducted at Multiple Clinical Sites

DURHAM, NC--(Marketwire - April 16, 2008) - Aldagen, Inc. today announced that the first patient has been treated in a Phase III clinical trial for ALD-101. Aldagen is developing ALD-101 to improve cord blood transplants used to treat inherited metabolic diseases in pediatric patients. ALD-101 is a population of adult stem cells isolated from cord blood using Aldagen's proprietary technology. The company commenced the Phase III clinical trial of ALD-101 to evaluate its ability to accelerate neutrophil and platelet engraftment following cord blood transplantation in these patients.

40 pediatric patients with inherited metabolic diseases undergoing a cord blood transplant will be treated in the multi-site Phase III clinical study. The primary goal of the study is to determine if ALD-101 can accelerate the restoration of circulating platelets. A 24-patient Phase I/II study of ALD-101 was previously conducted and a statistically significant reduction in the time to platelet engraftment was observed in patients receiving ALD-101 as part of a cord blood transplant compared to patients who had received a cord blood transplant without ALD-101 in an earlier independent clinical trial.

Cord blood transplantation has been shown to successfully treat children with inherited metabolic diseases, such as Krabbe Syndrome, Metachromatic Leukodystrophy, Hurler Syndrome, and Adrenoleukodystrophy. These diseases are often fatal with few treatment options other than a stem cell transplant. Cord blood transplants do carry numerous risks. The time for cord blood transplant patients to regain adequate levels of neutrophils and platelets, referred to as engraftment, can be lengthy. During the period of time between transplant and engraftment, patients are at high risk for life-threatening infections, bleeding, and transfusion-related reactions.

About Cord Blood Transplants

Umbilical cord (UBC) stem cells are located in the umbilical cord of a newborn at birth. After the baby has been delivered and the umbilical cord has been cut, blood is drawn from the umbilical cord. It is a completely non-invasive procedure with absolutely no risk to either mother or child. Umbilical cord stem cells are not embryonic stem cells.

About Aldagen, Inc.

ALDAGEN is a biopharmaceutical company developing proprietary regenerative cell therapies that target significant unmet medical needs. The Company has four product candidates in clinical trials. Aldagen's most advanced product candidate, ALD-101, is currently in a pivotal Phase III clinical trial to evaluate its effectiveness in improving cord blood transplants used to treat inherited metabolic diseases in pediatric patients. The Company is also conducting Phase I/II clinical trials on three product candidates: ALD 151 to improve cord blood transplants in the treatment of leukemias, ALD-301 to treat critical limb ischemia, and ALD-201 to treat ischemic heart failure. Aldagen's product candidates consist of specific populations of active adult stem cells that the Company isolates using its proprietary technology. To learn more about ALDAGEN, please visit www.aldagen.com.

For more information, contact:
Ed Field
President and COO
Aldagen
919-484-2571
www.aldagen.com

Michelle Linn
Linnden Communications
508-362-3087

Upcoming "One Step Closer" Walk for Leukodystrophy in Old Bridge, NJ

2008-04-16T11:14:00.002-05:00

Wanted to let you know about this opportunity to rally the troops and kick some Leukodystrophy butt! :)

Susannah Rutan is putting together a "One Step Closer" Walk in Old Bridge, NJ, to raise funds for The Stennis Foundation. She is a nanny for a boy named Eric Brown, age 9, who has an unnamed Leukodystrophy.

The Walk will be Saturday, May 17, at Lombardi Field at the High School in Old Bridge. Check-in begins at 12:00, the Walk begins at 1:00. Registration fee is $10 which includes a t-shirt.

Online registration is now open at www.stennisfoundation.org.

I really hope you will mark your calendars, save the date, and be at the Walk. I will be there -- and I want to see you!!

p.s. If you have friends and/or businesses that would be willing to help sponsor the Walk, that would be awesome!
xoxox

p.s.p.s. Pleeeeeeeeeeeeeeeease repost this, and help spread the word! If you have websites, such as MySpace, Facebook, CaringBridge, or other personal sites, please post this information on your site. Also, please copy and paste this into an email, and send it to everyone you know.

We really need a good turnout and need to raise funds for desperately needed research! Please help us!!

RIP Dr. Sam Stennis

2008-03-04T13:04:00.000-06:00

Dr. Sam Stennis died on Sunday, March 2, 2008, ending his 11 year battle with Adult-onset MLD. He was 59. The Stennis Foundation was named for him, and our work will go on in his memory, as well as in memory and in honor of all who have been affected by a Leukodystrophy.

Cheezy Riders Invitational now posted on YouTube!

2008-02-28T15:56:00.001-06:00

The fabulous Cheezy Riders Invitational has now been posted! This was the first event of its kind for The Stennis Foundation, and it was amazing! The pics in this video are just a few of many. We are so grateful to the Cheezy Riders for this event! Please check out the video:
http://www.youtube.com/watch?v=F3zMk7KjDDI.

Thank you for your support of The Stennis Foundation!

"Recycle for Research"

2008-02-18T12:05:00.000-06:00

The Stennis Foundation has launched the "Recycle for Research" Campaign, and we need your help!

Please save the tabs from soda cans, or from pull-tab canned foods, and send them to:
The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

This will help us raise funds for desperately needed research for the Leukodystrophies. Please help us help others, through the work of The Stennis Foundation!

"One Step Closer" Walk for Leukodystrophy in Old Bridge, NJ!

2008-02-18T11:53:00.000-06:00

Mark your calendars! The Stennis Foundation is hosting a "One Step Closer" Walk for Leukodystrophy in Old Bridge, NJ on Saturday, May 17, 2008. It will be held at Lombardi Field at the High School in Old Bridge. Registration and sign in will begin at 12:00, and the Walk begins at 1:00. The length of the Walk will be four miles.

This walk is being put together by Susannah "Sissy" Rutan, who is honoring Eric Brown, and all who are affected by a Leukodystrophy. Our Jersey fam includes Reese, Warren, Anthony, Matthew, Laura, Chris, Steve, Dawn, Nicky, and Peter. And Brielle, KaliAnn, and Tyler, who were thought to have MLD, but turned out to be Batten's...another lysosomal storage disorder.

Please mark your calendars, get people to sponsor you, and let's make a serious dent in getting rid of the Leukodystrophies forever. We are "One Step Closer to a Cure!"

A New - SHORT - Video on YouTube

2008-02-16T17:48:00.001-06:00

I have posted a SHORT video on YouTube. This one is of the "One Step Closer" Walk for Leukodystrophy we held in Brighton, Massachusetts, honoring Athena Reitano and Raghavan Sundar. There aren't many pics, because my camera wasn't working right. But we had a great time, and funds were raised for research! Please view this video: http://www.youtube.com/watch?v=3DzAxrhm40c. This video will also be posted on our MySpace.

ANOTHER New Video on YouTube!

2008-02-13T17:58:00.002-06:00

I have posted another video on YouTube. This one is of the "One Step Closer" Walk for Leukodystrophy we held in Allen, Texas. It was an amazing event, honoring Nathan Fleming and Ross and Trevor Joiner. We had close to 300 walkers that day. It was awesome! Rhonda, Nathan's mom, and her friends did an awesome job putting it all together! Please view this video: http://www.youtube.com/watch?v=xG0lfMhZ0Kc. I will be posting it on our MySpace, too. If you would like to post these videos on your page, the code is available on YouTube.

Thank you for supporting the work of The Stennis Foundation!

New Video on YouTube

2008-02-12T19:25:00.000-06:00

If you have ever wondered about the work of The Stennis Foundation, this video is a must see: http://www.youtube.com/watch?v=6lHrup2gKtM.

The Stennis Foundation is committed to raising awareness of the Leukodystrophies, and to raising funds for Leukodystrophies research. The fundraisers are "for the families" -- to bring Leukodystrophies families together with other Leukodystrophies families. The funds raised are used to fund desperately needed research. There are some interesting things happening in the world of research, in Mexico. Although these latest developments are not "FDA approved" they have given hope to many MLD families.

Contributions to The Stennis Foundation are tax-deductible under IRS section 501(c)(3). Please visit http://www.stennisfoundation.org, or http://www.myspace.com/stennisfoundation for more information.

These Companies Match Employees Donations

2008-01-01T13:57:00.000-06:00

If you work for any of these companies, please consider asking them for a matching donation for The Stennis Foundation (and then ask others to do the same)!

3M
3Com Corporation
Abbott Laboratories
Aetna, Inc.
Albertson's Inc.
Alliance Capital Mgmt., LP
Allied-Signal Inc.
American Express Foundation
American Honda Motor Co., Inc.
American Int'l Group, Inc.
American Stock Exchange
Anheiser-Busch Companies
Aon Corporation
ARCO
Associates First Capital
AT&T Foundation
Atlantic Foundation
Automatic Data Processing, Inc.
Avon Products, Inc.
AXA Financial, Inc.
Bank of America
Bank One, NA
Bankers Trust Company
Baxter Allegiance Foundation
Best Products Foundation
Bestfoods
BF Goodrich Company
Black & Decker Corporation
Boeing Company
BP America
BP Amoco Corporation
Brunswick Foundation, Inc.
California Comm. Foundation
California Endowment
California Wellness Foundation
CAN Foundation
Capital Group Companies, Inc.
Centris Group, Inc.
Champion International Corporation
Charles Schwab Company, Inc.
Chase Manhattan Corporation
Chevron Corporation
Chicago Title & Trust Company
Chubb and Son Inc.
Cigna Foundation
Circuit City Stores Inc.
Cisco Systems Inc.
Citgo Petrolkeum Corp.
Citibank/Citicorp
Coca-Cola
Conoco Inc.
Continental Insurance
Cooper Industries
Corning, Inc.
Delux Check Printers, Inc.
DFS North America
Dictaphone Corporation
Digital Equipment Corp.
Dow Corning Corporation
Eaton Corporation
Eli Lilly & Company
Embassy Suites, Inc.
Emerson Electric Company
Equitable Insurance
Ericsson Inc.
Exxon
Fannie Mae
Federated Department Stores Inc.
Fieldstone
Fingerhut Corporation
Fireman's Fund
Freddie Mac
Fuji Bank, Ltd.
GAP
General Cinema Corporation
General Dynamics
General Mills
General Motors
Georgia-PacificGLAXO Welcome
Goodyear Tire & Rubber
GTE Corp.
H.& R. Block, Inc.
H.J. Heinz Company Foundation
Hallmark Cards, Inc.
Hambrecht & Quist, LLC
Hewlett Packard
Home Depot, Inc.
Home Savings of America
Honeywell Inc.
IBM
Illinois Tool Works
Ingram Micro
Irvine Corporation
J.C. Penny Co., Inc.
James Irvine Foundation
Johnson & Johnson
Johnson Controls Inc.
JP Morgan & Company, Inc.
Kawasaki Motors
Kimberly-Clark
Kmart Corporation
Kraft General Foods
KZLA-FM
Levi Strauss & Company
Lexmark International Inc.
Liz Claiborne Inc.
Loews Corporation
Lubrizol Corporation
Lucent Technologies
Malinckrodt Group Inc.
Mass Mutual- Blue Chip Co.
MasterCard International Inc.
Mattel Children's Foundation
Mazda
McDonald's Corporation
McGraw HillMCI Telecommunications
McMaster-Carr CompanyMead Corp.
Media One Group
Mellon Bank Corporation
Merck & Company Inc.
Merrill Lynch
Microsoft
Miller's Outpost
Mitsubishi International
Mobil Oil Corporation
Monsanto
Monsanto Company
Morrison & Foerster, LLP
Morton International Inc.
Motorola, Inc.
Mutual of America
Nabisco Group
NCR Corporation
Neiman Marcus Group
Newmont Mining
Nissan North America Inc.
Northern Trust Company
Norton Company Foundation
Olin Corporation
Oppenheimer Funds, Inc.
Pacific Enterprises
Pella Corporation
Pennzoil Company
Pepsi Company
Pfizer Inc.
Phelps Dodge Corporation
Philip Morris Companies Inc.
Pitney Bowes Inc.
Pitson Company
Polaroid Foundation
Prudential
Quaker Oats Company
QualComm
R.C. Baker
Radio Shack
Ralston Purina
Reuters America, Inc.
RJ Reynolds Tobacco
RLI Insurance Company
Rockwell InternationalSafeco
Sara Lee Corp.
Sempra Energy
Shearson Lehman Brothers Inc.
SmithKline Beecham
Sony Corporation
Sony Pictures Entertainment
Southern California Gas Company
Sprint Corporation
Stanley Works
State Farm Mutual Auto Insurance Co.
Subaru of America, Inc.
T. Rowe Price Associates Inc.
Taco Bell
Tandy Corporation
Tektronix Inc.
Temple-Inland
Tenet Healthcare
Tenneco Inc.
Texas Instruments
Textron
The Gillette Company
The Irvine Company
The Sports Club/LA
Thiokol-Foundation
Time Warner Inc.
Times Mirror Company
Toyota Technical Center
Transamerica System and Administration
Travelers Express
Tricon Foundation
TRW Foundation
U.S. Bancorp
U.S. Borax Inc.
U.S.A., Inc
Union Pacific Corporation
United Postal Service
Universal Studios
UPS Foundation
USG Foundation, Inc.
W.M. Keck Foundation
Warner Music Group
Warner-Lambert Company
Washington Mutual
Weingart Foundation
Western Asset Management CompanyWestinghouse Electric Corp.
Weyerhaeuser Co.
Whirlpool Corporation
Xerox Foundation

Corporate Giving

2007-12-11T23:56:00.000-06:00

Hello!

We are looking for funds for 2008. Are you a business owner? Please consider The Stennis Foundation in your 2008 budget! Does your workplace offer corporate giving? Many workplaces offer a corporate giving program where you can have so much of your paycheck go to United Way. Did you know, you can ask United Way to disperse funds to The Stennis Foundation? It's a wonderful way to give.

Many workplaces also offer matching funds -- when employees give, the company they work for will match the donation. Please, help The Stennis Foundation raise the funds that we desperately need to be able to support research -- in hopes of a cure.

We're One Step Closer!

God Bless!

Please Consider The Stennis Foundation in Your Holiday Giving!

2007-11-28T09:17:00.000-06:00

Hello!
The holidays are upon us. Please consider a gift to The Stennis Foundation in honor of, or in memory of, someone special. There are many whose lives are affected by leukodystrophies or lysosomal storage disorders, or who have died from these insidious diseases. We will send a card to the family of whomever you choose, letting them know that a gift has been given "in honor of" or "in memory of" their loved one.

For business owners whose fiscal year is about to start over, please include The Stennis Foundation in your annual budget.

Wishing you and yours a very Merry Christmas, Happy Hanukkah, Happy Kwanzaa....and Happy Holidays!

Thank you for your love for, and friendship to, The Stennis Foundation!

p.s. Please pass this on, so that others may know of this opportunity!

Support The Stennis Foundation today!

2007-11-04T12:53:00.001-06:00

Fundraiser for The Stennis Foundation

2007-10-25T13:52:00.000-05:00

Do you have old cell phones - that no one is using - lying around the house? If so, please consider sending them to The Stennis Foundation! We are sponsoring a cell phone drive, to raise funds for research. The Stennis Foundation currently supports the Gene Therapy research project at San Raffaele Institute in Milan, Italy, and we would like to help further this project. People's lives are depending on this research.

Please send your phones today! You can send your phones to:

The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

If you have questions, please call (806)355-5254.

Please pass this on to all your friends! We want all the old cell phones we can get!!

Beautiful!

2007-10-09T15:04:00.000-05:00

That's the only word that describes the wonderful new website! Please go check it out...http://www.stennisfoundation.org. A very special thanks to Rocky, Phillip, and Kyle, who made it happen! The graphics, the layout, everything about the site is just incredible. I am so excited about this site. The guys left some things about the old site in place...this blog, which I will now update on a regular basis, and the guestbook! So if you go by the site, please, please sign the guestbook!

We extend our sympathies today to the Hancock family. Almost two years ago, their 25-year old son, Lane, died from transplant complications, while being treated for Adrenoleukodystrophy. Yesterday, Mike Hancock died, leaving behind Diane and Stuart. Please keep Diane and Stuart in your prayers, as the other half of their family is in heaven. Our hearts grieve with them.

Just a note to ask you to please keep all of the Leukodystrophies families in your prayers...there are so many...some with MLD, some with ALD, some with Krabbe's, some with PMD, some with Tay-Sachs, which really isn't a Leukodystrophy, but a Lysosomal Storage disorder; and some with unnamed Leukodystrophies. When you get right down to it, these diseases are all insidious, and a cure must be found for them. Please consider a gift to The Stennis Foundation today.

The Stennis Foundation is a 501(c)(3) nonprofit organization, so your gifts are tax-deductible. Please give with confidence, knowing you are partnering with us in forcefully advancing toward a cure for these horrible diseases.

God Bless!

All New Website Coming Soon!

2007-09-07T10:04:00.000-05:00

I am elated to tell you that a beautiful new website is coming soon! I have seen a preview of the site, and it is absolutely fabulous! So please keep checking back! And when the beautiful new site is up, please leave a message in the guestbook!

Stem Cells Harvested from Baby Teeth!

2006-11-26T17:15:00.000-06:00

There are some great and exciting things happening in the world of research. Dr. K is doing some fabulous research at Duke. Drs. Naldini and Biffi are making great strides at San Raffaele Institute in Milan, Italy; and now there is something new that I'm excited to report! You may have never heard of this, it's the Tooth Cell Bank! They harvest stem cells from children's baby teeth, which could possibly help save lives! Lives affected with various forms of the Leukodystrophies, MS, ALS, and others.

Please take a look at this! (Click the picture).

Thanks so much!

The Stennis Foundation is now on MySpace!

2006-10-08T10:30:00.000-05:00

The Stennis Foundation is now on "MySpace!" Check us out: http://www.myspace.com/stennisfoundation

If you have a MySpace account, you can log on and be our "Friend." To do this, just go to our profile, and click on "Add to Friends." MySpace will send us a message, and then we'll add you. We have a slide show of photos on there; so your loved one may be on there now. I will be changing out the photos every so often, because it only lets us have 16 pics at a time, and I want everyone to have time on there. If we don't have your photo on our main web site (stennisfoundation.org), and you would like it on there, please let me know.

MySpace seems to be the latest "craze" -- many people use it. I think it's a great tool. If you don't have an account, it's very easy to create one.....and then you can have your MySpace site, too!! (Just go to http://www.myspace.com).

Thanks for being a friend -- to me, personally, and to The Stennis Foundation. See you on MySpace!

"Cord Blood Bank Struggling to Collect Donations"

2006-09-04T14:16:00.000-05:00

This article, originally posted in the San Antonio Express News, was posted in the Amarillo Globe News this morning:

Cord blood bank struggling to collect donations

The Associated Press
SAN ANTONIO, Texas — Five years after a state-funded program to collect stem cell-rich umbilical cord blood was created, officials say getting donations remains difficult despite plenty of interest.

The nonprofit Texas Cord Blood Bank, which stocks a public supply of the valuable blood used to treat potentially fatal diseases, reports that the program has an inventory of fewer than 1,000 units.

Blood from umbilical cords is a source of stem cells that can treat patients with certain cancers, like leukemia or lymphoma. Studies have also shown that cord blood can works as well as bone marrow transplants from unrelated donors to repair broken blood-making systems.

About 6,000 units are needed for the cord bank to be financially self-sustaining, said Mary Beth Fisk, the bank's technical director.

But only four Texas hospitals out of hundreds are participating in the program, which must compete with private cord banks that parents often choose so they can later use the blood from their children if needed.

"The No. 1 question they have is, 'Will I be able to use my baby's blood, then?'" said Dr. Nancy Finney, an obstetrician at San Antonio Methodist Hospital. "And I say, no, it's a public donation. But if enough people donate to the cause, then that boosts your chance of ever finding a match from your own child if they needed it."

Methodist Medical City in Dallas and Valley Baptist Medical Center in Harlingen and Brownsville are currently the only hospitals in the program. The cup-sized donations end up in liquid nitrogen freezers at San Antonio's South Texas Blood and Tissue Center for storage.

Methodist has collected about 2,500 donations since last year, but only 800 were good enough collections to make it to the storage freezers.

Fisk said one of the problems in getting more hospitals to participate is cost. While the bank will train doctors and nurses on how to collect the cord blood, hospitals must still dedicate at least one person to coordinate and collect the donations.

In San Antonio, University Health System spokeswoman Leni Kirkman questions why the bank doesn't offer to pay the costs for coordinators, since hospitals are already financially strapped.

"That would seem like the way to go," she said.

———

Information from: San Antonio Express-News,
http://www.mysanantonio.com

Copyright 2006 The Associated Press.

Getting "One Step Closer"

2006-08-28T21:47:00.000-05:00

I can't believe it's been so long since my last post. I've had lots going on, with the illness of my daughter, and trying to raise money to support Dr. Kurtzberg's incredible research at Duke.

We attended an MLD conference in North Carolina last month. Thanks to Dean and Teryn of the MLD foundation, for hosting it. Dr. Kurtzberg wasn't able to be there, but Dr. Escolar was there, and Dr. Szabolcs, along with Dr. Orchard from U of M, and others. There was talk of MSC cells; and oligodendrocyte cells -- which is what I am so hopeful about.

The Stennis Foundation is doing lots of "behind the scenes" type of work right now, in the hopes of something really big, and being able to raise lots of money. The MLD book is coming along....I had it all edited last year, and then I encountered a horrible virus on my laptop, which caused me to lose absolutely everything. I had to go back to my server, and retrieve all the emails and stories....and then have been working like crazy to get it all re-edited. I have a publisher -- they recently published another book I authored. So the publisher is ready, and as soon as I get this all finished, I will send it in. Thanks for your patience in this endeavor.

The website will soon undergo an upgrade. And, we are looking for a building to house our offices.

We are ever hopeful that the research being conducted by Dr. Kurtzberg and Dr. Beam is the exact ticket we need to bring an end to MLD, as well as reversing the prior damage caused by MLD. Your support is most important in this. And remember, your contributions to The Stennis Foundation are tax-deductible.

Thanks so much for your help! We are "One Step Closer to a Cure!"

Exciting Things Happening in the World of Research

2006-02-12T08:11:00.000-06:00

I am so sorry for the long delay in updates. Things have been busy, busy around the Foundation front, and our home front! We, of course, went through the holidays, and then my work had a busy week called ZION, which is a week of revival-type services, then the weeks after were busy, because people wanted to purchase the recordings of ZION. After that, my daughter and I went to Minneapolis, MN, to attend the memorial service of Dr. William Krivit - an incredible brilliant man, who was a pioneer in the transplant process for MLD, and other leukodystrophies. We returned home, I sent out tax receipts, and then my daughter wound up in the hospital for 11 days. So if you didn't get a receipt for a contribution you made to The Stennis Foundation, please let me know, and I'll get you one ASAP. There is a possiblility that I missed you. We are home from the hospital now, and doing better. Thank God.

We have some research opportunities we'd love to support. One is at UMass, another is at Duke. We currently support research at Duke - The Ross Joiner Fellowship for the Study of Lysosomal Disorders in Children. The same doctor (fellow) who is conducting this research, Dr. Donald Beam, along with Dr. Joanne Kurtzberg, has harvested, isolated and grown a particular type of cell known as an oligodendrocyte from umbilical cord blood. This is awesome....this type of cell has the potential to STOP MLD once it is infused into the body. And there is great possibility, that it can repair the damage that has already happened from MLD! Is that not amazing?!? With this type of research, it could bring an end to MLD, and it could help MLD cases like Sam Stennis, Anthony Tomaino, Lucas Viscomi, Tucker Wells, Emma McGregor, Max Trimper, John and Christopher Evanosky, and others....the list goes on and on....and this would make such a difference in so many lives! Please consider joining with The Stennis Foundation in supporting this research!

The Stennis Foundation
PO Box 30065
Amarillo, TX 79120
(806)467-2747
http://www.stennisfoundation.org

Have a great week, and please keep all the leukodystrophy families in your prayers. One day, we'll beat this....of that I'm confident.

We're One Step Closer to a Cure!

2006: A Year of Breakthrough for the Leukodystrophies

2006-01-08T13:03:00.000-06:00

We hope you had a great Christmas, Hanukkah, New Year, and holiday season. Ours was really good, and then we began the New Year with a week of special services at church. Every year, we have what we call ZION....every night for the first week in January. It's a time we set aside every year to seek the Lord and focus on Him. Our Senior Pastor speaks, and then we have other guest speakers throughout the week. It's such a special time.

I have an URGENT PRAYER NEED to share with you: Micah is a beautiful baby with ALD, currently going through the brutal process of transplant at Duke. His ammonia level is very high, meaning liver problems. And he only has about 15% kidney function. He is in need of urgent prayer! Please visit his site (link is on our main website's links page), and leave a note of prayer, support, or encouragement in their guestbook.

The "Blue Ribbon Postage" campaign is going great....what a great way to raise awareness of the Leukodystrophies...We've worked so hard to get the Leukodystrophies recognized, and now we have it. So let's take it and run with it! Just go to our main site, and click on the "stamp" on the front page. And you'll want to get your blue "One Step Closer to a Cure" wristbands, too! Ordering information is on the front page. And in case you're wondering where the front page is....it's here. Just click the link.

Thank you for keeping us in your prayers, and as always, we ask you to please remember all the Leukodystrophy families.

Praying that 2006 will be the year of breakthrough in the Leukodystrophies!

God Bless!

Blue Ribbon Postage!

2005-12-11T19:34:00.000-06:00

A great new fundraiser -- actually, we've had it going for a while now -- is "Blue Ribbon Postage!" Yes, that's right! Stamps with Blue Ribbons for Leukodystrophies awareness on them! They are available through The Stennis Foundation website. They come in sheets of 20, for $17.99. For each sheet sold, The Stennis Foundation receives $2! So buy your postage through our site, and help The Stennis Foundation raise funds for research. These are great looking stamps! Also, you can purchase apparel and gifts through our online store. Just click on the postage stamp on the front page of The Stennis Foundation site, or you can click on the "Stuff" link on the left side of The Stennis Foundation page. The stamps are great! Order yours today! You can still get your wristbands, too, so make sure you get yours...if you haven't already!

Now, I have sad news to share with you....

Dr. Bill Krivit passed away this week. What a loss for the MLD community! He was a pioneer in the transplant process...he transplanted the children of some of my friends. He loved his children patients, and just loved life! I met him at an MLD conference in Washington, DC. Jacqueline (from the Myelin Project) and I laughed and laughed and laughed, as Dr. Krivit told us many jokes. He also told us his age, and when we didn't believe him, he pulled out his driver's license, and told us that people "asked for his ID" all the time! He was a funny, quick-witted, kind-hearted gentleman. He will be missed! Our sympathies to his family.

Samuel Young Stennis, father of Dr. Sam Stennis, also passed away this week. I called him "Mr. Sam," (and I call his son, "Dr. Sam). Mr. Sam was such a precious, gentle man. He loved to watch his grandchildren play sports - football, basketball, or volleyball. It didn't matter which sport -- he loved them, if his grandchildren were playing. Recently, Mr. Sam's pastor came to see him, and asked if he could pray for him. Mr. Sam told the pastor that he appreciated it, but he would rather the pastor pray for "[his] son who is sick." Of course, he was referring to Dr. Sam. What a loving man! Our sympathies to the Stennis family. Mr. Sam was a precious man...I will miss him.

And I will pray for his son who is sick, Dr. Sam Stennis. I will also continue to pray for Max and Sam Trimper; for Anthony, Matt, and Laura Grace Tomaino; for John, Christopher, and Jack Evanosky; for Caleb and Levi Johnson; for Dominic and Dennis Geisser; for Emma McGregor; for Lucas Viscomi; for Maddigan Lang; for Tucker Wells; for Athena Reitano; for Emily Hart; Kaitlyn Roberts; Cory Lewis; Patrick Osmar; Joe Graham; Elana Hageness; Olivia Hoffman; Gabriel Smith; Nicolas Roy; Zach Harrison; Micah Fleming; Lorenzo Odone; Ashleigh Gwin; Jackson White; Lindy Suhr; and so many others! I'll pray for their healing, and I will fight for their health. I'm so tired of these babies, children, and adults losing their lives here, because of these horrible diseases called the leukodystrophies. The war is on....and we will WIN! (Right, Bob Evanosky?)

Please pray for the Trimpers and Hancocks, and all who have recently lost loved ones, as they continue to face the "firsts" without them. And as always, we ask that you keep all of the Leukodystrophy families in your prayers.

MERRY CHRISTMAS! HAPPY HANNUKAH! HAPPY HOLIDAYS!

Blessings,
Trish

Grieving for Maddie, Lane, and Laramie

2005-11-28T16:34:00.000-06:00

After losing Maddie Trimper on November 7, to MLD and EBV, we lost Lane Hancock to ALD on November 10. Then just last week, we lost Laramie Moyer to MLD! How my heart breaks for these families. We have just got to find a cure for these insidious diseases. There are so many of them....even unnamed leukodystrophies....a cure must be found, and quickly!

I am working with a doctor at UMass, to pilot a research program into lysosomal storage disorders. I will soon post his proposal, and then I will be asking for your help to fund it. We've got to do this. So many lives are depending on us!

I'm working on a huge - and I do mean HUGE - fundraiser. I'm so excited about it, and can't wait to share details....which I will do, as soon as I have them in place. I'm also trying to plan a "One Step Closer" Walk for Leukodystrophy in Michigan, and actually two in California. These are in the planning stages, so everything is kind of "sketchy" right now....I will post details as they become available.

We just got a new shipment in of the "One Step Closer to a Cure" wristbands. If you haven't gotten yours yet, they are available for $5 each, plus $1 shipping (for up to five bracelets) through The Stennis Foundation. Just send your check for however many bracelets you want, plus the appropriate amount for shipping, to:

The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

Please keep the Trimpers, the Hancocks, and the Moyers in your prayers. And as always, pray for all our Leukodystrophy families. Have a good week!

God Bless!

Maddie Trimper, My 7-Year-Old Hero

2005-11-08T00:55:00.000-06:00

The song playing is "I Run For Life" by Melissa Etheridge. I dedicate this to Maddie, who ran the hardest, bravest race I know. Maddie, we will continue this race, and we will think of you!

My 7-year-old hero is the toughest and the fiestiest little girl I have ever known. I had the privilege of meeting her in person one weekend in May, when I flew to North Carolina and spent the day with my hero and her awesome momma. My 7-year-old hero is Miss Madeline Trimper.

Three years ago, Maddie's brother Max was diagnosed with MLD. Since MLD is a genetic disorder, Jeff and Jane had Maddie and Sam tested, and they too, were diagnosed with MLD. Max received his transplant of umbilical cord blood at University of Minnesota, in January of 2003. In October of 2003, Maddie and Sam were transplanted at Duke. Maddie developed some complications from transplant - an EBV lymphoma in her abdomen....this was a large mass, pressing on her organs, and causing Maddie all kinds of pain.

Maddie had been admitted at Duke several times over the last two years, this last time, they were there from April to August. She got to go home for two weeks or so, and then she was admitted to DeVos Hospital in Michigan. While they were at Duke, cells were taken from Jeff and Jane, and they were sent to New York to be processed, so they could attack this mass.

On Monday, October 10, the Trimpers found out that the cells were ready, and Maddie became well enough to make the flight to New York City. She received three doses of the cells, and we so hoped that this would be the answer to my hero's health complications. But it was not meant to be.

Maddie fought a good fight and finished her race, at 7:15 tonight, 6:15 Central time, passing from this life to her eternal life. She closed her eyes here, and opened them in heaven. She took her last breath here, and her first breath in heaven. She still lives - Jesus said "whoever believes in Me will never die." The Bible says that "To be absent from the body is to be present with the Lord." Maddie lives on....she lives in each of our hearts, until the day we are united with our Lord, and reunited with our - as Carolyn Wyman so eloquently expresses it - Miss Marvelous Maddie Madhatter Miracle Monarch!

Maddie Trimper, I love you.

Jeff, Jane, Max and Sam, JoJo, Jill, Sally, Bob, Claudia, Don and Marcia, and Aunt Cindy, and all the rest of the family.....my words are so inadequate at this time...I love you all, and pray that God would wrap His arms around you all, as you lean on Him and each other these next few days, weeks, and months. I will see you soon.

To all the readers, please keep all the Trimpers and Rhodes in your prayers. Their guestbook is locked up right now, due to so many people wanting to post. So please keep checking their site, visit it often, and leave them a note in their guestbook when CaringBridge gets it fixed.

God's Goodness, Research, and the Power of Prayer

2005-10-17T11:32:00.000-05:00

We continue to stand in awe and amazement of God's goodness! So far, the total raised from the "One Step Closer" Walk for Leukodystrophy held in Paris, Tennessee, on October 1, is $48,000! This will fund a research project in a big way.

It is so important that the money for research keep coming in. We are in a fight for peoples' lives, and the only way we can win this fight - short of a miracle - is for research to be funded. If we have a breakthrough in MLD, that could open the doors for breakthroughs in other leukodystrophies, such as ALD, PMD, and Krabbe; which would help all of our friends who have MLD - Tucker, Max, Maddie, Sam, Anthony, Matthew, Laura Grace, Lucas, John, Christopher, Jack, Emma, Olivia, Athena, Emily, Maddigan, Cory, Patrick, Justin, Kaitlyn, Sam, Katelyn, and Kendal....the list goes on and on....Our ALD friends - Lorenzo, Lane, and Zach. Families affected by PMD, among whom is our friend, Jansen; and families affected by Krabbe, such as the Gwin family, with their beautiful baby, Ashleigh.

We are currently working on a project to be piloted at UMass, under the direction of Dr. Ed Ginns. Dr. Ginns' research has consisted of other lysosomal storage disorders such as Gaucher's, with success. Please keep this pilot project in your prayers. And since we've mentioned some names above, please mention these - and all the leukodystrophy families - in your prayers, as well.

Someone else who is in need of prayer is our Leukodystrophies Prayer Warrior, Carolyn Wyman. She continually prays for our loved ones....now it is time for us to lift her up. The cancer is back; however, God is greater -- He has delivered Carolyn from this so many times, and as long as we will pray, I'm confident He will deliver her again!

May this new week bring you new hopes and new expectations! God Bless!

The Walk in Tennessee -- INCREDIBLE!

2005-10-04T21:19:00.000-05:00

O my goodness! Never have I seen such an outpouring of love and support! The walk in Paris, Tennessee, was so awesome. Paula went with me, Rhonda went with me, and Gail met us there. There were 750-800 walkers present, and so far, we've raised over $45,000 for MLD research -- from this Walk alone! Isn't that incredible?!?

The Madisons and Wells' are lovely families. Tucker is absolutely beautiful, as is his brother, Davis. We experienced true Southern hospitality the whole time we were there. GG & Bubba had us over on Friday night. We had a fabulous dinner, lovingly prepared by Margaret, GG's best friend. We had the honor of meeting all of their family members and friends who came for the Walk. Jobe and Joy - is your baby here yet? Also on Friday night, we gathered around Tucker and had a prayer time for him. Then we all went back to the hotel, and tried to sleep....for me, not an easy thing to do.

We woke up Saturday, and got ready, and then went to the Eiffel Tower, which was the starting point of the Walk. We were not expecting all the people we saw when we got there! There were so many people, and it was only 7:30 a.m.! By 8:30, the crowd had grown to over 700 people, and I know that more came after the Walk began. How awesome, to see so many people gathered for the purpose of honoring Tucker, raising awareness of MLD, raising funds for MLD research, and glorifying God! He's so awesome, and so deserving of ALL glory and ALL honor!

After the Walk, we were served a wonderful lunch back at the hotel. Thank you to all who so selflessly gave of themselves to make sure we were taken care of. It was such a blessing to be able to meet even more friends and family members of the Wells/Madison bunch. I've come to love you all, and commit to you - again - that I will not stop till a cure is found for MLD! Dinner at the Fresh Market on Saturday night with Angela, Tucker, Davis, Lou, Pam, Gloria, Jimmy, Paula, and Rhonda was so much fun. Sunday was Rhonda's birthday, so the wait staff came and sang to her! She was surprised - and blessed (I think)! :o)

There is so much more I could write...the Walk was awesome. God was, and is, so faithful. Gloria and Jimmy, thank you so very much, from the bottom of my heart!

Sincerely,
Trish

p.s. Keep praying for Maddie Trimper - she's had a very rough couple of weeks. They will be going to New York the end of this week for some type of transfusion, to help get rid of this mass! Details are on their CB site.

Prayers Needed in a Big Way Right Now!

2005-09-23T10:31:00.000-05:00

Prayers are really needed right now for Maddie Trimper. She has a mass in her abdomen, which she has had for a while. She has received radiation to make it shrink, and it appears that it has grown. The mass is EBV (Epstein-Barr Virus), associated with transplant. She got to go home a couple of weeks ago, and has been back in the hospital in Michigan, and now they are looking at transporting her back to North Carolina, by air transport.

Please, please -- pray for Maddie and the Trimper family, specifically. And please keep all the leukodystrophy families in your prayers. I will update when I can, and when I know something. Check out the CB sites for more info. You can get there through the links section on our main page.

God Bless!

The Walk in Tennessee

2005-09-15T12:40:00.000-05:00

We are gearing up and raring to go! This Walk promises to be a great one! Please support us with your prayers, your presence....or your pocketbook! :o)

Have a good weekend!

"One Step Closer" Walk for Leukodystrophy

2005-09-11T22:04:00.000-05:00

This is a pic of the Walk we had in Allen, TX, in April. It was an awesome Walk. We had 265 walkers, and raised $10,000 for research! If you've never attended one of our Walks, you need to!

And if you haven't gotten your "One Step Closer to a Cure" wristband yet, you need to do that, too! They are $5 plus $1 each for shipping. Just send your check for the number of bracelets you would like, and we'll ship them out to you, when your check arrives. Send your requests to:

The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

The Walk in Paris will be here before we know it, and we'd really like for you to get involved! If you can't be there physically, but could help financially, that would be great. And of course, we ask that you support us with your prayers. If you'd like to bring the Walk to your town, let us know!

These diseases are horrible, and a cure must be found! That's why we're here -- to fight for families such as the Trimpers, and "Kick MLD in the Butt," to fight for families such as the Tomainos, and "D-stroy MLD," and to fight for families such as the Evanoskys, and "Win in the End." Remember, every prayer we pray, every person we make aware of these diseases, and every dollar we raise, will bring us "One Step Closer to a Cure."

Please keep all the leukodystrophy families in your prayers.

Have a great week!

Full Speed Ahead!

2005-09-08T12:30:00.000-05:00

Plans are going full speed, for the "One Step Closer" Walk for Leukodystrophy in Paris, TN! The Walk will be October 1, at 8:30 a.m. Yes, this means that registration and sign-in will begin at 7:30. There are other events in Paris that day; and our having the Walk earlier ensures that people can get to the other events if they so desire.

The Stennis Foundation's website has been updated, with some new links, and some new photos. Stop by anytime -- and sign the little "comment" blog at the bottom of the page, letting us know you were there! Also, you are welcome to join the stennisfoundation discussion -- email me and let me know you want in, and I'll add you. This discussion is limited to those who are totally serious about kicking MLD butt, about D-Stroying MLD, about getting "One Step Closer to a Cure," and about Winning in the End. We will use this to strategize in reaching these goals.

Make sure to order your "One Step Closer to a Cure" wristbands. Information is on The Stennis Foundation's website. And as always, please keep all the Leukodystrophy families in your prayers. God does hear, and He does answer.

"Before you call, I will answer, and while you are yet speaking, I will hear" (Isaiah 65:24).

Upcoming "One Step Closer" Walk for Leukodystrophy

2005-09-03T00:31:00.000-05:00

We have a "One Step Closer" Walk for Leukodystrophy coming up on October 1, in Paris, Tennessee. This Walk will honor 5-year-old Tucker Wells, a darling boy whose smile can melt your heart. If you are able, please support this Walk. Information is available on The Stennis Foundation's website.

Our thoughts and prayers go out to the family of "Queen Maddy" Bates; she passed away Wednesday from AML.

Please keep all the leukodystrophy-affected families in your prayers. And....remember to order your "One Step Closer to a Cure" wristbands! They are $5, plus $1 shipping, each; available from The Stennis Foundation.

God Bless!
Trish

"One Step Closer to Cure" Wristbands

2005-08-24T20:48:00.000-05:00

Hello all!
If you haven't gotten your blue "One Step Closer to a Cure" wristband yet, please order yours today! The wristbands are $5 each, plus $1 shipping per band. Send your request for bracelets to:

The Stennis Foundation
PO Box 30065
Amarillo, TX 79120

I'm proud to report that navy ribbons have been trademarked for Leukodystrophies awareness! You know -- pink ribbons are for breast cancer; red ribbons are for AIDS....and now navy ribbons are for Leukodystrophies!

For more info on serious Leukodystrophy-Butt-Kicking, go to http://www.stennisfoundation.org. Please also go to the links page, where you can visit Dr. Sam's new caringbridge site. Don't forget to sign the guestbooks! We have a "Comments" section on The Stennis Foundation's site....it's down at the bottom of the main page. You don't have to log in or be a member to sign it. Thanks to those of you who do sign in. It's great to know you're there!

I encourage you to sign up for a blogger account! You can respond to current posts, you can even have your own blog. It's awesome.

Take care!
Trish

Website stuff

2005-06-20T11:41:00.000-05:00

A new CaringBridge site has been set up for Dr. Sam! Go to our links page on the main website to visit it. Also, please sign the guestbook before you leave [the CaringBridge site], and you can leave a note on our main site, by clicking on "Comments" at the bottom of the front page.

We're gearing up for a few Walks -- visit the main site for info. And if you want to work with us to do a Walk in your town, just let us know! That's about it for now. Have a good week!

Trish

Hello!

2005-05-22T20:57:00.000-05:00

Hi, welcome to The Stennis Foundation's blog! A place where you can ask questions, make comments, and say what's on your mind. This is a totally unmoderated discussion blog, so make yourself at home!

Take care!
Trish