Dear Friends and Family!
Welcome to our website!!!! Anyone think it's time for another WALK??? It's me again - Markie Noah! Jot down Sat. Aug 25th, 2007 on your calendar cause we're gearing up for a fun day to benefit the Smith-Lemli-Opitz/RSH Foundation.
WALK DETAILS: Registration starts: 10:30 am; Penny & Pals begins: 10:45am; Walk begins: 11:30am @ the main shelter in Lindenwood Park in Fargo, ND.
For those of you who don't know me yet...I live here in
Fargo, North Dakota with my parents Mark & Gretchen Noah and my 4 sisters Maggie, Kelly, Mary & Katie. And I want to tell you a little bit about why I am so special!!
I was born with Smith-Lemli-Opitz/RSH Syndrome. It's a rare genetic disorder that affects one in about 40,000 - 60,000 births. And although the syndrome was discovered back in the 1960's... it was only in 1993 that scientists learned that children with SLOS do not make adequate amounts of cholesterol, an essential nutrient that supports organ functioning and brain development. Children with SLOS suffer developmental delays and in some cases, severe physical and internal malformations that are life threatening. 80% are lost before they are born and most born on the severe end of the spectrum will die before they turn 1 year old.
I was very fortunate to be born on the milder end of the spectrum. And although this means a mental impairment, a heart condition and various other medical challenges... it doesn't slow me down too much. I go to a special preschool with other special friends just like me. And I have to mention that my favorite part of every day is riding the cool SCHOOL BUS that picks me up at my front door!
The reason why I am writing is that I want to ask for YOUR HELP. We are hosting another WALK to raise awareness and raise money to support continuous ongoing research into SLOS and for finding better treatments for me and kids just like me. Our family began our commitment to making a difference last year when we hosted the 1st Annual Mark Noah Balloon Walk in August. With your support, we were able to raise just over $38,000!! The SLOS Foundation was thrilled. It was their largest group of donations in a single event EVER! With these monies and with monies donated from a golf fundraiser held in NY... they were able to give $50,000 in grants to researchers whose research would have stopped without their help.
I have to share how frustrating it is when you have a syndrome that is so rare. Funding is almost non-existent. Even government funding to the National Institute of Health, one of the only facilities that do research studies on kids with SLOS, got their funding cut up towards 60% in the wake of the Katrina diseaster and the ongoing war in the past few years alone. These studies are CRUCIAL to keeping hope alive that we can someday find a cure... or even just for developing better drugs that will make a significant impact on behavior, the ability to eat, and improving cognitive ability in kids with SLOS. [Markie currently participates in 2 SLOS studies (NIH and OHSU) and both are suffering significant funding cuts.]
WE INTEND TO CHANGE THIS!!
We invite you to join in our fight! Join us on August 25th, 2007 at
Lindenwood
Park in
Fargo, ND . All monies raised will be donated to the Smith-Lemli-Opitz/RSH Foundation, which is a non-profit organization dedicated to helping raise awareness of SLOS. They also help SLOS families connect for support through a wonderful esupport group, they host a biannual conference (that we attended in
Oregon June 2007!) as well as providing grants to scientists researching SLOS. Anyone who was at our WALK last year will tell you that it was a fun day filled with magic!
And like last year... our event will be kicked off by the great kids entertainment group: Penny and Pals.
But what if you cannot come??? CAN YOU STILL DONATE??
Absolutely, yes!! We will be accepting donations through this website or directly to our home throughout this next year. Donations can either be mailed to the SLO/RSH Foundation, c/o Mark & Gretchen Noah -
1710 South 8th Street, Fargoe , ND
58103
or can be done by credit card through this totally secure website online.
Thank you for joining in my fight to find a cure for my syndrome! By making your donation - we'll be one step closer to SLOS kids leading healthier lives!
Thank you so much and we'll see you there!
Love, Markie Noah
p.s. I'm going to thank (in advance) all of the people who have committed to being MAJOR SPONSORS or PLEDGE PARTNERS for our WALK. Anyone can do it... just call us for an additional pledge sheet (701) 293-3790. About a dozen families also collected pledges in honor of other SLOS children - Andrew, Jukie, Sean, Carys, Cody, Jake, Morgan, Gina, Mary & Amelia, Michelle, Abby, Eric, Tyler, Gavin, Jennifer, Zack! Thank you for your support - We walk in honor of and to benefit ALL kids with SLOS!!!
p.p.s. You can also vist my new website set up by Uncle Matt: www.marknoah.com