Bud McLaughlin is turning 70 this summer and in honor of his birthday you can donate to the Smith Lemli Opitz/RSH Foundation.   Smith Lemli Opitz is the rare genetic syndrome that Bud's grandson has.  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 5th grade this year.  He is in a self-contained special education class.  But he gets lunch, PE, music and art with regular education kids.  He had the same program last year and really excelled.   He is reading at almost a 1st grade level and is doing some basic math.  Andrew is also trying really hard to play sports.  He has played baseball, basketball and flag football the past few years.  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 this year and our annual visit for our research protocol is on hold.   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.   

 

Thanks for honoring Bud on his big 70th birthday by donating to this cause that is very close to his heart!   

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!