The Stennis Foundation is a non-profit organization committed to raising public awareness regarding the Leukodystrophies, as well as raising funds for Leukodystrophies research, and forcefully advancing toward a cure for these diseases. The Stennis Foundation also advocates for blood and marrow donation, and works with other organizations to recruit groups and individuals to the "Be The Match" national bone marrow registry.
The Stennis Foundation is the originator and official sponsor of Leukodystrophies Awareness Month, It's the L.A.W.™ (Leukodystrophies Awareness Walk), and World Leukodystrophies Day (Last Saturday in September).
IT'S THE L.A.W.™ (Leukodystrophies Awareness Walk)
Registration now open until noon on Monday, September 16, 2013.
The Leukodystrophies Awareness Walk is anywhere you are! It's a 10-mile walk to raise awareness of Leukodystrophies. You can walk all 10 miles -- alone or with a team; or you can gather a team, and have each team member walk a certain distance. Be creative, and have fun! Sport your navy blue, and let the world know about Leukodystrophies! Registration is $25 and includes a t-shirt, and other goodies while supplies last!
Registration is only open from 10:00 a.m. Monday, 9/02/2013 to noon Monday 9/16/2011.
Orders for shirts will be turned in on Monday afternoon, allowing time for production. Shirts will be mailed promptly after production finishes. We will ship outside of US; registrant will pay additional postage.
Go to our registration page (http://ezregister.com/events/7895/), and click the "Register Now" button to sign up and show your support! Even if you don't want to walk, your "registration" will help us as we continue "Raising awareness of Leukodystrophies and funds for research!" Register, and you'll get a t-shirt! Payments through PayPal must be submitted at time of registration.
LEUKODYSTROPHIES AWARENESS RIBBON MAGNETS
These fabulous magnets for Leukodystrophies Awareness are here, and you can get them for $1.25 each, plus postage. Please use the "Contact" link to let us know how many you would like. We will figure postage and let you know; then you can use the "Donate" link to submit payment.
Thanks for your support! Because of your generosity, we are "One Step Closer to a Cure!"
BLUE RIBBON RECIPES!
"Blue Ribbon Recipes" is a collection of recipes from Leukodystrophy families and friends everywhere! These books make fabulous gifts, and we are very excited about this project! Order your cookbooks by clicking here.
Do you want to send flowers for special occasions? The Stennis Foundation has partnered with flowerpetal.com, and we receive 12% of all sales. Just go to our special "flower website" at http://stennisfoundation.flowerpetal.com, and place your order!
The "One Step Closer" Walk for Leukodystrophy in Allen, TX on 7/24 was a fabulous event! We raised awareness of Leukodystrophies, we raised funds for Leukodystrophies research, and the "Be The Match" national bone marrow registry has 18 new committed donors!
"One Step Closer" Walk for Leukodystrophy
We have walks tentatively scheduled for the following towns, but we need volunteers to help carry out the duties to actually make the events happen. Please contact us if you can help in securing locations, obtaining sponsors, helping to promote the events, recruiting participants, and helping on the day of the event.
Grand Rapids, MI - TBA
Minneapolis, MN - TBA
Tampa, FL - TBA
South Carolina - TBA
Registration is open for all Walks! Click here to register online. You can pay your registration fee through PayPal.
If you have ever wondered about the work of The Stennis Foundation, this video is a must see:
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, and cover administrative expenses. 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 MLD families.
Contributions to The Stennis Foundation are tax-deductible under IRS section 501(c)(3).