Age: 2 and a half
Parents: Darby Scott

Dear friends and family,

As most of you know, my daughter, Jenna has a devastating neurological disorder called Rett syndrome (RTT). Jenna is 2 and a half and was diagnosed when she was 18 months old. She needs assistance with every aspect of her daily life yet she seems to keep a big smile on her face and her strength has gotten me through many long days. She truly is an inspiration to everyone who meets her and she lights up every room she enters. In support of the International Rett Syndrome Foundation and October being Rett syndrome Awareness Month we’re holding an online fundraiser for her!!

For those of you who do not know what Rett Syndrome is, here are a few facts for you. Rett syndrome (RTT) is the leading genetic cause of severe impairment in girls. It is caused by mutations in the gene MECP2 and 95% of girls diagnosed with Rett have this mutation. Rett syndrome is the only autism spectrum disorder with a known genetic cause and is commonly misdiagnosed as autism or cerebral palsy. It affects all ethnic, racial and socio-economic groups; every parent is at risk for having a child with Rett syndrome. However, IRSF has funded many research projects to find treatments and a cure for RTT. These grants include a landmark study performed by Dr. Adrian Bird, Ph.D. in which the symptoms of RTT were reversed in a mouse model! The results were astounding; breathing and weight normalized, mobility and gait restored, and tremors disappeared in mice just days away from death. The study suggests Rett syndrome and related disorders are reversible, even in the late stages of the disease! Now more than ever, the search for treatments and the funding of research and family support are crucial!

I have become involved with the International Rett Syndrome Foundation not only to help fight this devastating disorder but also to spread awareness for my daughter who cannot speak on her own behalf. We have to be her voice. In honor of October as Rett Syndrome Awareness month I have decided to join IRSF as they help parents and family members host this online fundraiser. Rett syndrome has taken away the future many of us have dreamed for our daughters. IRSF is working to give it back – please join us in our mission. The girls and women affected are our driving force and inspiration to beat Rett syndrome.

We’re asking all of your friends, family, co-workers, and neighbors to participate in Jenna's online fundraiser! All you have to do is click here to visit IRSF’s new Care and Cure Café. Enjoy some poetry and short stories about other Rett angels and learn more about IRSF and Rett syndrome. Then, scroll down and click on Jenna's picture! This will take you straight to her very own page in the Café. We have already written a toast to her and given you a brief bio – get to know her a little! Then enjoy a drink in this virtual café in her honor. Keep in mind once you’ve made a donation to IRSF in honor of Jenna you will immediately receive a confirmation to your email which serves as your tax letter for a tax deduction.

We welcome your special wishes for our Rett angel. After you donate online you will have the opportunity to send her and our family a personal message, if you’d like.

Thank you in advance for your support. Please pass this along to your friends and family – spreading awareness is another way to help us achieve our goal of finding treatments and a cure for Rett syndrome.

Sincerely,
Darby

Donate Now in Jenna's Name

Jenna's Coffee Cup!












Donations to Date: $250