2019 Cure SMA Northern California Walk-n-Roll

2019 Cure SMA Northern California Walk-n-Roll

The Missing Linc - Team Lincoln - (picture age 1 year - Ode to Landry)
The Missing Linc - Team Lincoln - (picture age 1 year - Ode to Landry)

The Missing Linc - Team Lincoln

I am fundraising for Cure SMA because they are leading the way to a world without spinal muscular atrophy. SMA is the number one genetic cause of death for infants and 1 in 50 people in the United States is a genetic carrier.  

Lincoln was diagnosed with SMA Type 1 on August 1, 2018.  While Lincoln was the missing "Linc" our family didn't know we needed (after the passing of his brother Landry), Lincoln is also missing a link causing his SMA - Lincoln is missing his SMN1 gene - Survival Motor Neuron 1 - taking away his ability to walk, eat and breathe.

SMA impacts the lives of thousands of people and Cure SMA is an irreplaceable resource. By providing services like care packages for newly diagnosed families, teens, and adults, local Summit of Strength programs, an equipment pool, and the Annual SMA Conference - Cure SMA supports the community as they navigate life with SMA. Cure SMA has also invested more than $75 million in research and has funded half of all the ongoing new drug programs for SMA, including Spinraza, the first-ever approved therapy for SMA.   Cure SMA has been invaluable to our family - sending a care package upon diagnosis, giving us our registration and hotel rooms for the Annual Conference and loaning us a very expensive car bed to ensure Lincoln's safety while we travel (he turned blue on a 15 minute car ride in a regular car seat!)

Join my team and make a difference in the lives of those affected by SMA! If you are unable to register, please consider making a gift to support Cure SMA’s mission to find a cure for SMA. 

Make a donation of $25 or more to support Cure SMA so they can keep providing these important programs and services.  

Thank you for joining us in the fight against SMA!   

 

Katee, Jason, Cole, Mae and LINCOLN 

 

 

 

 

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