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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.
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The Stennis Foundation is recognized by the IRS as a tax-exempt charitable organization under section 501(c)3. We need your gifts, large or small, to help us forcefully advance toward a cure for the Leukodystrophies. Donate online by clicking here. Thank you for your support!
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FLOWERS!
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!
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Cheezy Riders 2009 Bird Memorial Invitational Ride and Family Fun Fair!
In memory of Warren Joseph Alexander III ("Bird")
Sunday, August 23, 2009 beginning at Wildwood Harley-Davidson (Wildwood), and ending at the Lower Township Moose Lodge (Erma).
Ride: $20 per bike, $5 for additional passengers. Includes entry into the Family Fun Fair.
Family Fun Fair: Cost is $10 per person.
(To register in advance, click here, which will take you to our PayPal donation page; include your info in the "note" section of your donation.
"One Step Closer" Walk for Leukodystrophy
Fargo, ND - Saturday, August 29, 2009 9:00 a.m. Lindenwood Park, Main Shelter.
Flint, MI - TBA
Minneapolis, MN - TBA
Tampa, FL - TBA
Austin, TX - TBA
South Carolina - TBA
Registration is open for all Walks! Click here to register online. You can pay your registration fee through PayPal.
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If you have ever wondered about the work of The Stennis Foundation, this video is a must see: http://www.youtube.com/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, 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 many MLD families.
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To those with new diagnosis of Metachromatic Leukodystrophy:
Your child may be able to participate in the upcoming Metazym Clinical Trial to be conducted at the University of North Carolina (UNC). Screening for 10-12 children is now in progress. Please contact Dr. Maria Escolar at (919)966-4810 for more information.
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Just a reminder, contributions to The Stennis Foundation are tax-deductible under IRS section 501(c)(3).
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Find out the ways you can help support The Stennis Foundation as they raise funds to advance research and find a cure for the Leukodystrophies.
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