To my friends and family,
It’s that time of year again….To bring awareness to Rett Syndrome and to drive funding for research that makes an impact on all the girls affected by it. This year we are mixing things up a bit! In October, I am participating in a 5-day, 355 mile ride from one mountain (Big Bear, CA) to another (Mammoth, CA) in support of the United States Adaptive Recreation Center (USARC). We are also participating in our annual local Rett Syndrome family picnic/strollathon. This specific site is for my IRSF goal.
As you know, my precious 9 year old daughter Jaidyn (aka "Lady Jaidy" or "daddy’s girl"), was diagnosed with Rett Syndrome in March of 2005. Rett Syndrome is a neurological disorder primarily in females caused by a genetic mutation on the MECP2 gene of the X chromosome which leads to severe physical handicap and significant delays in intellectual development (see www.rettsyndrome.org for more information). Imagine a combination of severe Autism, Multiple Sclerosis, Epilepsy, and Parkinson’s all wrapped up in one. THAT is Rett Syndrome. We are extremely fortunate that Jaidyn can walk, does not have seizures (fingers crossed) and can eat without the complications of a G-tube, among other issues. While Jaidyn may never speak again or cognitively develop beyond a 1 ½ year old, she is an amazing little girl filled with love. This ride is a piece of cake when I look at how hard Jaidyn works every day with her slew of therapies both in and out of school to simply maintain the skills she has. She is my inspiration. She is a special gift who has taught us about true love, patience (lots!), understanding, and what’s most important in life.
It was previously thought that the skills lost by girls with Rett were gone forever. However a couple of years ago, scientists actually found that the symptoms of Rett were completely REVERSIBLE in lab mice. Exciting, right?!? Well, thanks to your past donations, the first human clinical trials are actually starting this month! Needless to say, we are on pins and needles waiting to hear the results of this study (which won't be released for a couple of years...there's that patience thing!)
You have received info on this either because you have supported us in the past or have expressed an interest in receiving it. There is NO obligation or pressure to be engaged in or support this event. IRSF is an amazing foundation with truly amazing people who give so much of their time and energy to others. One of the reasons that IRSF is so near and dear to our heart is not only because of the cutting-edge research that they fund, but because of the never ending parental support they provide, especially for those newly diagnosed. I understand your time and charitable donations are limited, especially with the state of our current economy, and I truly appreciate your consideration.
This year, my goals are twofold: 1) to raise $6,000 in support of IRSF for research of Rett Syndrome (via this site) and (2) to raise $4,000 to support USARC programs while bringing awareness to Rett syndrome (via my USARC Peak to Peak 17 link at the upper right of this page).
All donations made to IRSF are tax deductible/501(c)(3) with Tax ID 31-1682518.
I apologize for the long note. I only reach out once a year for support and thus have so much to say! But most of all, THANK YOU to all who have supported us and IRSF in the past and to all of those who continue to do so. I have already expressed how lucky we are to have Jaidyn show us the true beauty in life and to have her help in keeping things in perspective. One of the gifts she also gives us, through you, is the opportunity to see the beautiful side of humanity. We are blessed beyond belief to have such supportive friends and family contribute to a cause that is so near and dear to our heart year after year!
Life is precious, enjoy it.
Danny, Briana, Jaidyn (9), and Emory (6 and 3/4!)