team kennedy
Our beautiful baby girl has been diagnosed with Spinal Muscular Atrophy, Type 1.
SMA is a genetic disorder, recessively inherited, which means both parents would have to carry the faulty gene. There is no family history of this disorder on either side. The prognosis is grim and there is no cure, but there is hope as research is advancing quickly.
Here is more information on the disorder: http://www.smafoundation.org/faq
Please keep our baby girl in your thoughts.
Jennifer and Christian Swann
Placentia, CA
In lieu of donations to the family, the Swanns would like all funds to go to Sophia's Cure Foundation. This foundation is currently providing significant funding for research efforts on a new gene therapy that is looking very positive for SMA kids. Click on the logo below to make a donation in Kennedy's name to Sophia's Cure.
Many of you have heard about little Avery Canahuati, whose parents created Avery's Bucket List. Their blog has gone viral over night. Unfortunately Avery died on April 30th just three weeks after her SMA diagnosis.
Amazingly, the same anonymous donor who contributed $400,000 towards the preclinical research required by the FDA has contacted Sophia’s Cure again and committed to matching -- DOLLAR FOR DOLLAR -- every contribution made in Avery’s honor, up to $500,000. If Avery is able to reach her goal of $365,000 in contributions, together with Sophia’s Cure Foundation’s own fundraising and the anonymous donor’s matching funds, we expect that this will be enough to fully fund the human clinical trial. This is an AMAZING opportunity.
Please, please, please, if you were ever thinking of making a contribution to help CURE SMA, now is your chance. Your dollars will have twice the impact. If you make the donation, please do so in Avery’s honor.
View an informational flyer on Kennedy that gives perspective on the joys and sorrows of SMA.
Download this flyer and bring it to the Buffalo Wild WIngs Bar and Grill in Irvine for dinner May 21st - May 24th and Sophia's Cure will get 20% of the proceeds to fund promising gene therapy research for SMA.
Donate or buy a quilt to support research being conducted at Ohio State University. This research shows significant promise to finding a cure for SMA.
Check out the quilts available.
