Hello family and friends!

Welcome to my website!  My name is Lexi Black, and I want to tell you about a fantastic event that's coming up!  My mommy & daddy are hosting the Alexis Black Walk to benefit the Smith-Lemli-Opitz/RSH Foundation.  It will be held on Saturday August 16, 2008 at Ritter Park in Huntington, West Virginia.

Walk registration begins at 10:30 a.m., with the walk starting at 11:00 a.m.  This is going to be a family event, so bring the kids, and we're sure to have a fun day!!  There will be an inflatable jumper set up, as well as face painting and balloons for the kids!

Now that I told you about the super walk we're going to have, I want to tell you a little bit about myself.  I live in Barboursville (Huntington), WV with my parents, Jason & Mandy Black.  I am 1 year old, and I am very special, because I was born with Smith-Lemli-Opitz/RSH Syndrome (www.smithlemliopitz.org). 

SLOS is a rare genetic disorder (affects 1 in ~20,000 births) that results in my body not making or processing cholesterol correctly.  Since cholesterol is essential for organ functioning, brain development and overall growth, kids with this syndrome suffer from developmental delays, feeding difficulties, and sometimes even severe physical and internal malformations that can be life threatening.  80% of children affected with SLOS are lost before they are born, and many on the severe end of the spectrum don't live to see their 1st birthday.

I was very fortunate to be born on the mild to moderate end of the spectrum.  Although I am very small for my age and have faced various medical challenges, I am doing great so far.  I can say a few "words", and I can even walk if I hold on to something.  My doctors say that I will probably have a developmental delay or mental impairment within the next year or two, but my therapists are helping me to stay on track as best as possible.  I see a physical therapist, a speech/language pathologist, and a dietician.  I like them a lot.

Now, back to the walk!  I need your help!!!  We are holding this walk to raise awareness about SLOS and to raise money that will support ongoing research into SLOS and hopefully help find better treatments or even a cure for me and kids just like me with SLOS.  Your donations can make a huge difference.  Funding for foundations like the Smith-Lemli-Opitz/RSH Foundation is almost non-existent.  Government funding to the National Institutes of Health, one of the only facilities that does research studies on kids with SLOS, was cut 60% or more in the last few years.  These studies are critical in keeping hope alive that someday a cure will be found and better drugs will be developed to improve behavior, the ability to eat, and cognitive ability in kids with SLOS.

So, again I invite you to the Alexis Black Walk for SLOS on August 16, 2008 at Ritter Park in Huntington, WV.  It is sure to be a fun day filled with magic!  All proceeds 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 provide grants to scientists researching SLOS in hopes of finding a cure, and they help SLOS families connect for support through an e-support group, a biannual conference (which we plan to attend in 2009!), and semi-annual newsletters. 

What if you cannot come - can you still donate?  Absolutely!!  We will be accepting donations through this secure website if you wish to donate by credit card, or you can mail a donation to SLO/RSH Foundation, c/o Jason & Mandy Black, PO Box 251, Barboursville, WV 25504 (make checks payable to SLO/RSH Foundation).

Thank you so much for joining in my fight to find a cure for my syndrome!  By making your donation, we are one step closer to kids with SLOS leading healthier lives!  I hope to see you there!

Love,
Lexi Black
(and my mommy & daddy!)

p.s.  Thanks in advance to anyone interesting in being a MAJOR SPONSOR or PLEDGE PARTNER for our walk.  All you have to do is call (304) 751-0024 and ask for an additional pledge sheet.  And don't forget to ask your company if they will match your donation!  Many families do this in honor of other SLOS children.  WE WALK IN HONOR OF AND TO BENEFIT ALL KIDS WITH SLOS!

 **The official registration and financial information of the Smith-Lemli-Opitz/RSH Foundation may be obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania , 800-732-0999. Registration does not imply endorsement.

***West Virginia residents may obtain a summary of the registration and financial documents from the Secretary of State, State Capitol, Charleston, West Virginia 25305.  Registration does not imply endorsement.