suely johns wrote -
Our son Ethan, age 9, was diagnosed with Marfan's Syndrome at 7 months. He wanted to start this fundraising page!!!
Today, he is sick and stayed home from school.. he is very bummed that he will be missing the Chess Club and the math test. We needed to turn a bad day of "I hate Marfan's" into something positive that he can look forward to... so he decided to find ways to raise $$$ for the NMF.
Last year, our family was the lucky recipient of the NMF-National Marfan Foundation Scholarship and we were able to attend their annual conference in Portland.
In 2 years, the NMF annual conference will come to our hometown, in LA!! Ethan wanted to do anything and everything possible to raise $$$ for another family to be able to experience what we experienced this past summer. We were able to take Ethan to see a team of the top medical experts on Marfan Syndrome, and he had the opportunity to finally meet other kids and adults with Marfan. It was such a positive life changing experience for our family that we wanted to make sure another family can get to experience it.
Please help Ethan to raise $$ for the NMF Scholarship Fund so another kid and family can come to the conference, see our beautiful SoCal, and know that it was all because of you that they were able to come!!!
Ethan thanks you in advance and continues to brainstorm other ideas to raise money.
Ethan would also like to ask everyone to have their own online fundraising page and join our team!!!!! Specially other kids!!!! That will mean a lot of him to see your support!!!
for more info: