Dear Friends and Family!
THANK YOU for a great event. We raised over $5,000.00. You can still donate online for the next several months and increase our donation amount.
We are sponsoring a fundraising event on Friday, August 24, 2007 in honor of our son Andrew Holinbeck. The event is to provide donations to the Smith Lemli Opitz Foundation. Smith-Lemli-Opitz/RSH Foundation, is a non-profit organization dedicated to raising awareness of SLOS. They also help SLOS families connect for support through a wonderful esupport (online) group, they host a biannual conference, and provide grants to scientists researching SLOS.
Andrew 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 SLO 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.
Andrew is very fortunate to have been born on the milder end of the spectrum. And although this means some developmental delays, learning disabilities, and some behavior issues... it doesn't slow him down too much. Andrew is entering 3rd grade at Conley Elementary School in Huntley, Illinois this year. He is in an inclusion program, he has a special education teacher for math, language arts and reading and is in a regular class for all other subjects including lunch, PE, music and art. He had the same program last year and really excelled. He is reading at almost a 1st grade level and is starting to do some basic math. Andrew is also trying really hard to play sports. He has played on a basketball team and soccer team this year. He struggles with some of the social interactions but just loves sports.
Smith Lemli Opitz is a rare syndrome, thus it has less publicity and less government funding. 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 disaster 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. Andrew currently participates in one of the studies and it is one of the many that are at risk of not receiving funding.
Currently, the only widely available treatment is a synthesized cholesterol supplement and/or eating raw pasteurized egg yolks to sustain compromised cholesterol levels. We want to find a cure for this syndrome.
We want to ask for YOUR HELP. We are hosting a fundraising event to raise awareness and raise money to support continuous ongoing research into SLOS and for finding better treatments for Andrew and kids like Andrew. This is our first year in sponsoring any fundraising activity for the Smith Lemli Opitz Foundation. We were spurred on by other families that have done this. Last year was our largest fundraising effort by families and they were able to raise almost $50,000. So we are hoping to help make a bigger difference this year. The money that was raised last year allowed the foundation to give $50,000 in grants to researchers whose research would have stopped without their help. The Noah family organized a very large event last year in Fargo, ND that raised $38,000. We are going to have our event the same weekend in hopes of unifying our fundraising efforts.
Please Join us on August 24th, 2007. Govnor's Pub - 220 N Randall Rd., Lake In The Hills, IL. We will be serving appetizers from 7 to 10 pm and are asking for a minimum $30.00 donation. We will also be holding a raffle or silent auction. If you plan to attend please RSVP to Holinbeck@comcast.net . Cash or check will be accepted at the event. A portion of your donation will be a direct donation to the Smith-Lemli-Opitz/RSH Foundation.
But what if you cannot come??? CAN YOU STILL DONATE?? YES YOU CAN!! We will be accepting donations through this website or directly to our home throughout the next 3 months. Donations can either be mailed to: SLO/RSH Foundation c/o David and Kim Holinbeck - 15 Heron Ct, Lake in the Hills, IL 60156. Checks should be made payable to SLO/RSH Foundation or a donation can be done by credit card through this totally secure website.
Thank you for joining in our fight to find a cure and raise awareness of Andrew's syndrome! By making your donation - we'll be one step closer to SLOS kids leading healthier lives! You can also find out more information about the syndrome at http://www.smithlemliopitz.org/. This is the website for the foundation.
Thank you so much and we'll see you there!
David and Kim Holinbeck