There are several ways you can help The Evanosky Foundation achieve its goals and fight MLD:
1. Hold a Fundraiser - You can "do your own" fundraiser to benefit The Evanosky Foundation. Some people have garage sales, some people make and sell jewelry, and others have walk-a-thons or poker tournaments. Any type of fundraiser you have, from small to large, is helpful, and we can help promote your event on our website and trhough our e-mail database.
2. Run or Walk in a Marathon or Half-Marathon - In 2009, The Evanosky Foundation officially participated in the Bank of America Chicago Marathon in October and the Chicago Rock 'n' Roll Half Marathon in August. You can run the marathon or do a walk/run for the half marathon and raise money by getting sponsors and donations. If you don't live in the Chicago area, you can compete in an event near you. We've had people run other marathons in California or other places and raise money competing in those events. The Evanosky Foundation can provide you with sample e-mails and letters that you can send to potential supports and we can also provide additional support. For more information, please click here.
3. Purchase Items for the Houses of Hope - In addition to House of Hope 1, The Evanosky Foundation opened House of Hope 2 in Durham, North Carolina, and House of Hope 3 opened in July 2009. These apartment homes are available to families whose children are receiving transplants at Duke University Children's Hospital for fatal metabolic diseases, such as MLD. We have developed gift registries for these homes and you can purchase items such as sheets, kitchenware, etc. All gifts are tax-deductible and welcome. For more information on the Houses of Hope and for links to the registries, please click here.
4. Coordinate a Book Drive - The Evanosky Foundation provides books to children who are undergoing transplants for metabolic disorders (like MLD), leukemia, or other cancers through its Jack's Library program at Duke University Children's Hospital in North Carolina as wel as Children's Hospital in Chicago. Since these children are very susceptible to germs and infections during treatment, and something as simple as a common cold can become life threatening, the books provided are brand new. Books are not shared, but each child is given a book to keep. For more information on Jack's Library, please click here.
Medical Research– We are currently supporting research at Duke University to find a cure for MLD. Dr. Joanne Kurtzberg is leading research that has the potential to stop the progression of MLD and other diseases, and we are hoping that human safety trials can begin soon.
Newborn Screening– Because children are often diagnosed too late for any treatment to be effective, The Evanosky Foundation is working to test for these fatal diseases at birth so children can receive treatment. Within Illinois, the Foundation worked with Senator Dale Righter to pass SB1566, which expands newborn screening to include five diseases that are similar to MLD.
Family Support- Families that are battling against a leukodystrophy are often under significant financial and time pressures because of their child’s disability. Also, if a child is a candidate to receive a stem cell transplant, the family will often have to move, maintain a residence near the medical facility, and miss work. For these cases, The Evanosky Foundation provides funds and medical equipment to help these families.
You can also make a donation now -- click here for more details!
