4th Annual Mark Noah WALK for SLOS
*** please forward this website to friends & family***
Dear Friends and Family,
I'm Markie Noah! And I want to welcome you to my fundraising page. I'm a really sweet little boy who lives with my parents and 4 sisters in Fargo, North Dakota.
First, I'd love to tell you a little bit about myself! I am 5-years-old and I attend preschool at Eagles Education Center here in Fargo. I will go to kindergarten in the fall and my Mom says that I'm really smart. I have 8 best friends (Jack T., Jack M., Patrick, Lindsey, Emily, Cailen, Katie & Beck) who love to play hockey and games with me at my house. I also like my friends at school and my teacher Laurie and my speech therapist Tiffany are the best! My favorite computer games are Poptropica and Webkinz and I can ride my bike faster than my little sister (which drives her crazy, by the way!) Last but not least, my favorite hockey players are: #99 Wayne Gretzky (NY Rangers - retired), #8 Alexander Ovechkin (WA Capitals) and Kenny Ryan (USA Hockey U18).
Another special thing about me is that I have a very very rare syndrome called Smith-Lemli-Opitz Syndrome. (www.smithlemliopitz.org) It's a genetic disorder caused by my body's inability to create and process cholesterol correctly. Although most people try desperately to avoid cholesterol in their diets... it actually is a very important thing that our body produces - especially during our early development. Cholesterol is a necessary cell coating nutrient that supports proper brain and organ development. Without it or when the process malfunctions, kids like me are left with a mental impairment, global delays as well as other various medical conditions, many of which are life threatening. 80% of children who are conceived with SLOS will die before they are born. And those born on the severe end of the spectrum will likely die before they turn 1-year-old. In fact, I am one of only about 500 children and adults who are living with SLOS in the United States.
WE INTEND TO CHANGE THIS!
For the past 3 years, we have raised money for the SLO/RSH Foundation, a non-profit organization dedicated to helping families learn all they can about the disease, find support and help promote research into finding better ways for special kids like me to grow and thrive the best I can. We've raised almost $80,000 for this wonderful organization and it has helped the Foundation to be able to give many small grants to specialists who are dedicated to keeping hope alive for a cure.
Please help us raise very needed funds for this wonderful cause. My Mom always tells people, "Think for a minute if your child had a life-threatening disorder and no one was raising any money to find a cure. What would you do? Would you throw in the towel and give up? Or would you raise your hands and FIGHT!?"
WE ARE FIGHTING FOR BETTER RESEARCH!
WE ARE FIGHTING TO RAISE AWARENESS OF THE DISORDER SO THAT FAMILIES CAN FIND THE PROPER DIAGNOSIS!
WE ARE FIGHTING FOR BETTER CHOLESTEROL TREATMENTS FOR SLOS CHILDREN!
WE ARE FIGHTING FOR A CURE!
Please JOIN OUR FIGHT by donating to our annual WALK. By pledging our efforts, you are supporting the rarest of the rare children who every day beat all odds just to be born and live their special lives.
Love and many thanks, Markie Noah (and family)
Your donation is 100% tax deductible and is sent directly to the SLO/RSH Foundation. This organization is run solely by volunteer power so that the majority of your donation goes directly towards research and awareness efforts. Donating on this website is safe and secure.
4th Annual Markie Noah Balloon Walk
Saturday August 29th, 2009
10:30am - 1:00pm (lunch at 11:30am)
Thank you for visiting my fundraising page!
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!