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The Official Smith-Lemli-Opitz | RSH Foundation Website

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! The Official Smith-Lemli-Opitz RSH Foundation Website. The 2015 Smith-Lemli-Opitz Family Medical Conference in Portland, Oregon. Updated Smith Lemli Opitz Foundation Program. And check in at the SLOS Family Facebook page. To find out more. We hope to see you there! Mitted to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure. The Smith-Lemli...

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The Official Smith-Lemli-Opitz | RSH Foundation Website | smithlemliopitz.org Reviews
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The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! The Official Smith-Lemli-Opitz RSH Foundation Website. The 2015 Smith-Lemli-Opitz Family Medical Conference in Portland, Oregon. Updated Smith Lemli Opitz Foundation Program. And check in at the SLOS Family Facebook page. To find out more. We hope to see you there! Mitted to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure. The Smith-Lemli...
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1 about slos
2 forum
3 research
4 grant guidelines
5 stair consortium
6 fundraising
7 current studies
8 frequent questions
9 about the foundation
10 lifetime registration form 2014
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The Official Smith-Lemli-Opitz | RSH Foundation Website | smithlemliopitz.org Reviews

https://smithlemliopitz.org

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! The Official Smith-Lemli-Opitz RSH Foundation Website. The 2015 Smith-Lemli-Opitz Family Medical Conference in Portland, Oregon. Updated Smith Lemli Opitz Foundation Program. And check in at the SLOS Family Facebook page. To find out more. We hope to see you there! Mitted to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure. The Smith-Lemli...

INTERNAL PAGES

smithlemliopitz.org smithlemliopitz.org
1

Fundraising Overview

http://www.smithlemliopitz.org/fundraising-overview

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! We often receive many questions about fundraising to benefit the SLO/RSH Foundation. Here we attempt to answer all the questions you may have. Before you start, what you should know about fundraising for a non-profit organization:. There are over two million charities in the United States, and charities are the fastest growing population of organizations. The SLO/RSH Foundation is required, by law, to register in an...

2

Frequently Asked Questions

http://www.smithlemliopitz.org/frequently-asked-questions

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! Where you may ask questions of other families and friends, and to share in both the good times and the not so good times. Books and Learning Websites. Medical Equipment and Therapies. Schooling and IEP Help. Reflux and Gastrointestinal issues. Meet more of our families! Web Design by Eager Mondays. 1988 - 2012 Smith-Lemli-Opitz / RSH Foundation.

3

Carson Gallagher

http://www.smithlemliopitz.org/our-families/carson-gallagher

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! My amniotic fluid levels were getting low as I approached my due date. My doctor suggested an amniocentesis to rule out and chromosomal abnormalities, but everything came back 100% normal (we breathed a sigh of relief) andwe found out we were having a boy! Carson was born with many different SLO characteristics / abnormalities. Several are listed below:. Atrial Septal Defect (ASD). Extremely Arched Nasal Palate.

4

Smith-Lemli-Opitz | RSH Syndrome Overview

http://www.smithlemliopitz.org/smith-lemli-opitz-rsh-syndrome-overview

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! Smith-Lemli-Opitz RSH Syndrome Overview. What is Smith-Lemli-Opitz syndrome (SLOS)? SLOS is a metabolic disorder caused by a mutation in the DHCR7 (7-dehydrocholesterol reductase) gene on chromosome 11. This gene codes for an enzyme that is involved in the production of cholesterol. People who have SLOS are unable to make enough cholesterol to support normal growth and development. How do people get SLOS? With the r...

5

Events

http://www.smithlemliopitz.org/events

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! Meet more of our families! Web Design by Eager Mondays. 1988 - 2012 Smith-Lemli-Opitz / RSH Foundation.

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Holiday Specialties: A Fun And Engaging Earth Day Idea For The Whole Family

http://holidayspecialties.blogspot.com/2013/04/a-fun-and-engaging-earth-day-idea-for.html

We always want to make Holiday Specialties an interesting, memorable and fun blog to read but we also would like everyone who reads our posts to get some enrichment as well as fulfillment from the few sentences we give you in every post. Welcome To All Our Favorite Holidays. You Have come to the right place to read great stories and see terrific video of all your favorite holidays! Wednesday, April 10, 2013. A Fun And Engaging Earth Day Idea For The Whole Family. Go directly to this months Linvilla Activ...

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Holiday Specialties: What Only A Mother Can Possess

http://holidayspecialties.blogspot.com/2013/05/what-only-mother-can-possess.html

We always want to make Holiday Specialties an interesting, memorable and fun blog to read but we also would like everyone who reads our posts to get some enrichment as well as fulfillment from the few sentences we give you in every post. Welcome To All Our Favorite Holidays. You Have come to the right place to read great stories and see terrific video of all your favorite holidays! Thursday, May 9, 2013. What Only A Mother Can Possess. Happy Mother’s Day to all young and old Moms Everywhre! Look Into Gar...

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: August 2010

http://kateduren.blogspot.com/2010_08_01_archive.html

Tuesday, August 24, 2010. This past Sunday I took my twelve-year-old daughter, Geneva to see her first Broadway musical:. Having heard so many rave reviews, and knowing the powerful message behind the well-known song “ Defying Gravity. 8221; I had for years wanted to take my tween daughter to see this show, an enchanting spectacle that taught us both some important lessons just as Geneva is about to start junior high school. For those of you unfamiliar with the story,. Is an alternate take on the story of.

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: February 2010

http://kateduren.blogspot.com/2010_02_01_archive.html

Tuesday, February 16, 2010. Soon after Jukie’s diagnosis with Smith-Lemli-Opitz Syndrome. Of course, my husband Andy and I have schooled the kids as well, buying them books about having a sibling with a disability. Geneva especially devoured them. Some of her favorites are:. The Sibling Slam Book. What It's Really Like To Have A Brother Or Sister With Special Needs. Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs. Both by Don Meyer. Jukie is not SLO. 8221; she said. Anoth...

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: July 2012

http://kateduren.blogspot.com/2012_07_01_archive.html

Monday, July 23, 2012. Today I had one of those moments every mommy dreads. I took my six year-old son, Truman, to camp and left him watching me with all the stoicism he could muster. I don’t think he bought my confident façade, and I caught a glimpse of his lower lip trembling, thus betraying his own brave veneer. Truman struggles with a form of social anxiety called Selective Mutism. And I will use it! 8221; Truman desperately wants to speak freely, telling me, "I always talk in my dreams.". Clearly, s...

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: January 2015

http://kateduren.blogspot.com/2015_01_01_archive.html

Thursday, January 29, 2015. Today is such a happy day that Geneva keeps laughing, I keep crying, and neither of us can stop smiling. We’ve been waiting for this day for four years. Today is the day Geneva was liberated from her back brace! Look at her joy. Sunday, January 4, 2015. Fourteen years ago today you entered my world and changed everything. Your birth was so quick that no medical staff made it in time to help; we were on our own — just you and me in the water with your Daddy and Grammy...Daddy s...

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: July 2010

http://kateduren.blogspot.com/2010_07_01_archive.html

Thursday, July 29, 2010. It Shouldn't be this Hard. And here’s what I’m facing now: it shouldn’t be so hard to get Jukie the medicine that he needs to be healthy. Born with. Jukie cannot effectively produce cholesterol. Cholesterol is necessary for brain function, and other essential functions in the body. Jukie needs cholesterol to. Denies the medical necessity. Who also need medical foods). Doesn’t anyone see our struggle? 8221; I’m still crossing my fingers that the billing piece works out. ...Mommy t...

kateduren.blogspot.com kateduren.blogspot.com

Thriving in Holland: April 2015

http://kateduren.blogspot.com/2015_04_01_archive.html

Monday, April 13, 2015. 8220;I have a son, who is my heart. A wonderful young man, daring and loving and strong and kind.” Maya Angelou. My son Jukie was born with a rare genetic syndrome called Smith-Lemli-Opitz. While we are not granted emotional shortcuts in life, I’ve learned a few lessons which I wish I could have shared with my frightened self of all those years ago. Although I may not have fully understood or even believed what my more experienced self would share, I’d like to imag...To Jukie&#821...

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The Official Smith-Lemli-Opitz | RSH Foundation Website

The Official Smith-Lemli-Opitz RSH Foundation Website. SLOS STAIR STUDY – now recruiting! The Official Smith-Lemli-Opitz RSH Foundation Website. The 2015 Smith-Lemli-Opitz Family Medical Conference in Portland, Oregon. Updated Smith Lemli Opitz Foundation Program. And check in at the SLOS Family Facebook page. To find out more. We hope to see you there! Mitted to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure. The Smith-Lemli...

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