Cure SMA (formerly Families of SMA) has a new website, and Max is on the front page! Check it out at www.curesma.org! (Photo credit: Courtney Martineau)
When fifth-grader Joel James learned that his new baby cousin Max had been diagnosed with a serious genetic disease called spinal muscular atrophy, he told his parents he was going to keep giving Max lots of love. When they told him that SMA would not affect Max's cognitive development, Joel started brainstorming ways to help Max learn. "There is a lot of good technology and smart people in the world who would come up with a way to help Max as he gets older," he predicted.
Earlier this summer, Joel announced to his family members that he wanted to hold a yard sale and give all the profits toward helping Max in his fight against SMA. Yesterday the big day finally arrived. Friends, neighbors, and co-workers...so many people came out to purchase gently used toys for a good cause.
With everyone's help, Joel was able to raise over $300! We call that showing Max Strength! Way to go, Joel! We are so very proud...and Max is so very grateful.
When the PTA of Meadow Hall Elementary School (Kristen's former employer) found out about Max's diagnosis, they reached out to us about doing something to help. Five months later, they presented Max and our family with a check for Families of SMA for $1555. This money will support critical research towards a treatment or cure for Max and many other individuals with SMA, as well as supporting families and individuals living with SMA now (through conferences, expert information, equipment closets, fundraising support, and more).
We are overwhelmed by the generosity and dedication of our Meadow Hall ES family. Special thanks to Rachel Hellman and Regina DeCarlo for coordinating this amazing effort!
Today Max reaches an amazing wonderful milestone: his one-year birthday! We are so grateful for our little boy.
It just so happens that Max's birthday is also the beginning of SMA Awareness Month. If you are so inclined, consider donating $5, $10, or $20 to FSMA to help give Max the best present ever—a cure for SMA. Or consider sharing Max's website with your friends so that others will know about SMA.
Happy birthday, Max...and many more!
Click here to help give Max the best present ever...