In celebration of our almost 10 years with Evan, with his 9th Heaven Day on November 2nd and he and Alaina's 18th birthday on November 3rd, we are asking for your help in honoring Evan, his fight and loss, and his lifesaving legacy with his foundation, Be A Hero Become A Donor.
Since losing Evan, we have added over 25,809 donors to the national registry, and saved thousands of lives through the education and empowerment of countless people to donate their blood and their baby's umbilical cord blood, as well as commiting to the marrow and organ/tissue registries.
BAHBAD and it's volunteers nationally have also given hope and joy to families by providing them w/ financial support while in the fight, donating well over $100,000 to help fund the bone marrow donors we have added to the national registry, and we took on our most difficult task of advocating for newborn screening nationally and more specifically advocating right here in California for Adrenoleukodystrophy, the disease that took Evan's life. Newborn screening for ALD can save the life of every boy diagnosed with this terminal metabolic genetic disease. Due to the efforts for our California families affected, Govenor Brown signed AB1559 in September 2014 to mandate testing of all babies in our state for ALD. Unfortunately we had to amend the bill to wait for the feds, which we hope will happen in the next two years. The Myelin Project, Fight ALD and BAHBAD took on the financial burden to pay for our lobbyist, but without him and his staff, we would NEVER have made this bill come to fruition. It will take years to make good on this debt, but he is willing to wait, stating this effort will forever be close to his heart knowing the lives that will be saved due to our efforts!
It is also incredibly important that we can help families in financial crisis due to medicial emergencies and support other like-minded foundations in their efforts as well. This year we were blessed to help pay several bills for families in need.
Help us honor Evan and every patient that has been in need, is in need, and will be in need by becoming a donor. Not only do we need your vital resources, we need your monetary donation.