Little Allie (Jake's twin sister)

One of our young friends, Jake Brenner of New York, was recently charged with developing and completing an ‘Interpersonal Project’ for his school.  Jake, who lost his twin sister, Allie, to SMA when they were both nearly a year old, made it his goal that he would educate his school and community about this devastating disease. Going above the call and duty of the assignment, he also decided to raise money for an SMA cure by selling our blue FightSMA wristbands throughout his school and neighborhood.  Jake put a lot of time and special effort into this pursuit, and from these sales, he was able to raise quite a wonderful donation sum for SMA research.  All in all, his entire project was a marvelous success, and he received an ‘A+’ on the assignment from his teacher.

Jake, hard at work in his neighborhood

Jake recently turned thirteen, as would have Allie, and we are deeply humbled that he has chosen to honor her memory through this gracious contribution. Jake is such an incredibly well-spoken young fellow, so we’ll let him tell you more about it in his own words:

“On May 9, 1998, I wasn’t born alone. My twin sister Allie was also born that day. After about nine months of a happy life, we discovered that she had type 1 of Spinal Muscular Atrophy, the uncured and fatal disease that slowly saps away your muscle strength (to put it in simple terms.) On April 21, 1999, Allie lost her fight against the disease, less than a month from turning one. After learning this story, I knew I had to help, and this was the perfect opportunity.

“Thousands of infants die each year from SMA.  1 in 25 adults carry the SMA gene, and if both adults have the gene, their baby has a one in four chance of getting this uncured disease. Plus, most Americans have never heard of this disease. This is a major problem that together we can fix by finding a cure for SMA. I decided to raise awareness of SMA, make a flyer, and help my dad with his company by making an online donation site for SMA.

“To raise awareness of SMA, I told a lot of people my story and all about the disease. I also handed out pamphlets and postcards to my neighborhood telling them about the disease and telling them that I will be selling wristbands next week. After this, I made a flyer about selling the wristbands and about this disease. I put this flyer up at school and distributed them around my neighborhood. Finally, this week I helped my dad build an online donation site for SMA.

“I did so much better than I ever thought I would do! I called FightSMA and told them the amount of money I raised. They were ecstatic.  My money is going to researching for a cure, and about a month ago they had a breakthrough and the charity will need this money to help fund this research. I have learned a lot from this project. I learned that doing charity work, even a little, can go a long way. I learned that with my hard work, I am helping find a cure and save infants’ lives.  And I will definitely continue raising money until we find a cure.”

We are so overwhelmed with appreciation for all Jake’s hard work and accomplishments, and we are incredibly moved by the beauty of his actions.  We know that his whole family is very proud of him, too.

If you’re like Jake, and you would like to contribute to SMA awareness and education in your area, or if you are interested in learning more about what you can do support our research for a cure, please contact FightSMA.)

(Special thanks to the Brenner family.)