Anna has a dear friend named Presley. Last year, she was diagnosed with SMARD (Spinal Muscular Atrophy with Respiratory Distress). There are currently only 20 children living with this disease because most children born with it die very early. SMARD robs a child of their muscular abilities like walking and using their hands. But it also robs them of their ability to breathe and eat on their own. Their minds are bright and engaging but their bodies do not have the ability to support them without the aid of a ventilator, a feeding tube and 24-hour care.
Presley is three years old and wise beyond her years. She is funny and spunky and very loving. Anna and Presley love to play with their bears, have tea parties, and play on the iPad together. SMARD will rob her of her life if therapies or a cure are not found.
SMARD research receives no federal funding because it is rare, but thanks to funds raised by the small group dedicated to children with SMARD, there is some hope for Presley. Dr. Cox at the Jackson Lab in Maine has been researching SMARD and is on his way to finding new discoveries. For more info on the research, please see http://genetichealth.jax.org/research-in-action/other-genetic/smard.
The SMARD community has a goal to raise $100,000 to fund additional research and speed up the life-saving process. Mike and Mindy, Presley’s parents have created bracelets to help raise money for SMARD research. They have purchased the bracelets themselves so 100% of the donation goes directly to research. So far, they have reached $1000.
Bracelets are $6.00 each or 2 for $10.00 or 5 for $20.00.
If you can donate to Anna’s beautiful friend, please contact me at firstname.lastname@example.org and I will send you Mindy’s contact information. She has mailed them all over the world. I would be very grateful for any help! $6 is less than you would spend on lunch so brown bag it one day and donate!
If you have another idea for a fundraiser or if you know a group that might take up the SMARD cause, please let me know too. I would LOVE to help them!