Welcome to my fundraising website!
Hello family and friends! It's me again...Lexi Black! Welcome to my fundraising website!
I would like to give you a little update on me. I am 6 years old now, and I am a happy little girl who loves to be silly and make everyone laugh. My mommy tells me I'm sassy sometimes too! :) Most people don't realize what a special little girl I am...they think I am just very small for my age. But actually, as you probably already know, a special detail about me is that I was born with Smith-Lemli-Opitz/RSH Syndrome.
Right now I am helping my mommy & daddy get ready for the 6th Annual Alexis Black Walk to benefit the Smith-Lemli-Opitz/RSH Foundation. It will be held on Saturday August 24, 2013 at Barboursville Park (shelter #8) in Barboursville, West Virginia. Walk registration begins at 10:00 a.m., and the walk will start at 11:00 a.m. Lunch will be provided following the walk, and a silent auction will take place throughout the event, with the winners being announced after lunch! Please join us for this fun family event!
All donations collected at the Alexis Black Walk are tax-deductible under IRS 501(c)3 ID: 23-2635206, and will be given directly to the SLO/RSH Foundation, a non-profit organization dedicated to spreading awareness about SLOS, funding ongoing research into SLOS, and assisting in finding better treatments and maybe even a cure for Lexi and kids just like her. The SLO/RSH Foundation also provides a way for families of children with SLOS to stay connected and keep up on the latest research through an e-support group, a biannual conference (which we attended at the end of June in Pittsburgh, PA), and semiannual newsletters.
Currently, funding for research and treatments for SLOS is almost non-existent. The research studies are crucial in keeping hope alive that someday a cure will be found or someone will develop better drugs that will make a significant impact on behavior, the ability to eat, and/or improved cognitive ability in kids with SLOS.
The SLO/RSH Foundation has recently awarded grants for the following research projects, thanks to generous donors like you:
* Sterol and Isoprenoid Research (STAIR) – to learn more about how SLOS affects body chemistry and health and how cholesterol in the diet affects blood cholesterol and how the body handles cholesterol
* Using Mass Spectrometry to Reveal Proteomic and Metabolomic Signatures in Smith-Lemli-Opitz Syndrome Patients - to further understand the molecular distresses that occur in Smith-Lemli-Opitz Syndrome as a result of defects in DHCR7
Thank you so much for joining in our 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!
(and my daddy, mommy, & little sister!)
p.s. Many families donate in honor of other SLOS children.
**If you would like an Alexis Black Walk t-shirt, please email Mandy@alexisblackwalk.com with your name and t-shirt sizes. T-shirts are free with donations!
How can I donate?
If you are unable to attend, don’t worry – you can still donate!
You can mail a donation to:
c/o Jason & Mandy Black
PO Box 904
Barboursville, WV 25504
(make checks payable to SLO/RSH Foundation)
We will be accepting credit card donations through the Firstgiving secure website
(a 7.5% fee will be deducted from the donation for site fees)
We walk in honor of and to benefit all individuals with SLOS!
Fundraising to date
In the last 5 years, with your help, we have raised over $43,000 for the SLO/RSH Foundation at the Alexis Black Walk...not to mention a lot more awareness of the disease!!
**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.