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...
Our heartfelt thanks to Studio Fiesta and the nearly one hundred people who came to the Zumbathon last Sunday in support of Max and our family! We were especially glad that Studio Fiesta owners Marilin and Veronica got to meet Max before the event. You all showed so much love, and we are grateful to be part of such a caring community.
Before Kristen became pregnant with Max, she loved going to Zumba nearly every day. Veronica and Marilin, the two sisters who own Studio Fiesta, where Kristen attended Zumba class, appreciated having her as a regular. When she stopped coming, they reached out electronically and were delighted to learn that Kristen was expecting.
After nine months went by and Kristen still hadn't returned, the sisters sent a few messages letting Kristen know about upcoming Zumba events but received no word back. Little did they know that Kristen was wrapped up in Max's battle for life, and that, even when he was stable and back home, the thought of going back to Zumba brought tears to her eyes (because it reminded her of a time before she had ever heard of spinal muscular atrophy).
When Veronica and Marilin finally learned about Max's condition via Facebook, the two sisters decided they wanted to do something to help Max and our family. Thus, on July 27th, Studio Fiesta is hosting a Zumbathon fundraiser for Max.
If you like to move and dance, please come out for a couple hours and show your strength for Max in his fight against SMA. For just $10, you'll get a great dance workout with Studio Fiesta. All of the proceeds will go to our family towards offsetting the many costs of helping Max to live a full and healthy life.
Zumbathon Fundraiser for Max
Sunday, July 27, 2pm - 4pm
Lincoln Park Community Center
357 Frederick Ave, Rockville, MD 20850
Click over to our Facebook event page and let us know you'll be coming. Don't forget to invite your friends!
The open gym at Dynamite Agility Center was a huge success! So many families came out and showed their strength for Max in the fight against SMA: jumping on trampolines, wending their way across the balance beams, bouncing into the pit of foam blocks, or guiding their little ones through the agility center's various stations. In the party room, the video of Max using the WREX arm for the first time played on the big screen TV, as people learned about spinal muscular atrophy and other disabilities, the value of physical therapy, and devices like the WREX.
Thanks to everyone who showed up, as well as the HUGE outpouring of support for Max's online campaign, we were able to raise the money to purchase Max his very own set of WREX arms! We contacted the team at NEMOURS and let them know we were ready for the next steps and have been corresponding with them to get everything they need. As with his adaptive stroller, we're finding that ordering and making custom equipment takes time. We are trying to be patient, checking back as often as possible, and doing our best to have as much summer fun with Max as possible.
We will continue to keep you all posted on the process. We look forward to reporting someday soon that, thanks to you, Max has his own pair of WREX arms.
This Sunday, Dynamite Gymnastics will devote proceeds from their weekly open gym towards a pair of WREX exoskeleton arms for Max.
Time: noon - 1pm
(>2 kids in your family? Contact us for discount.)
Location: Dynamite Agility Center
4990 Boiling Brook Pkwy
Rockville, MD 20852
GPS mapping? Use: 4980 Wyaconda Road
Rockville, MD 20852
Once you reach this location, you will see a large banner directing you to our entrance.
For more info, see https://dynamitegc.com/DGymnastics/info/OpenGym.aspx
This short video below explains how the WREX enables Max to move his arms against gravity.
Can't make it this time? Donate online at https://www.youcaring.com/wrex4max.
UPDATE: the open gym will be at the Dynamite Agility Center at 4990 Boiling Brook Pkwy (next door to the gymnastics center). Also, the cost for this special open gym $15/participant -- the extra $7 on top of the normal $8 open gym fee will go towards helping Max. Thank you so much!
Helping Max beat SMA since 2013 by raising awareness and support for research and families.