Rothmund-Thomson Syndrome (RTS) is a rare genetic disorder that can affect people of all races and nationalities. Symptoms often first appear during infancy, usually between three and six months of age, in the form of a skin rash on the cheeks. Patients can have just a few or several features of the syndrome.

 

The Mission of the Rothmund-Thomson Syndrome Foundation is to foster worldwide awareness and education about RTS and related disorders and to encourage research through support of scientists and physicians devoted to studying the clinical spectrum, molecular and cellular basis of RECQL4 and related syndromes.

Sharing and Caring Conference - Michigan 2015


Wow! We just experienced a great Sharing and Caring Conference in Michigan. It was one for the ages. There are so many people to thank for making this conference such a success.

 

Starting with our ten RTS families who traveled from as far away as Washington, Missouri, Wisconsin, Massachusetts and Ontario, Canada to share their experiences and make new friends. Our participants ranged from 2 to 57 years of age.  A mix of new families and veteran families ready to share their knowledge, provide support, and make friends for life.  Emotions ran high as families discussed their worries, their achievements, and hopes for the future.  The room was filled with love, so much love.

 

We were also  blessed to have Dr. Wang, Dr. Levy (via Skype), Dr. Shwayder, and Dr. Zakutny participate to provide education and encouragement. Their presentations provided great insight into RTS and the challenges of coping, as a family, with a chronic disease such as RTS. Equally important was the opportunity for families to have some personal time with the doctors and each other.  We were very excited to hear about the ongoing research at Baylor College of Medicine and plans for a REQL Disease Conference in 2016.

 

A special thanks to my family in Michigan for all their hard work helping me secure the conference center and hotels for the event. They went the extra mile in preparing the lunches we enjoyed during the conference, entertaining the kids, and capturing the experience in photographs you can view here on our website.

 

Our work is not over by a long shot. This past year Dr. Wang’s Grant for RTS research ended and she is feverishly working on new Grant applications.  If we want to ensure that RTS research and clinical studies continue, we need to step up and help secure the necessary funding.  This is the number one priority for the Foundation.  We have a fundraising event ongoing at this time and we need your support.  We also need your support in identifying potential donors and your participation in new committees we are establishing for fundraising, reviving the RTS newsletter, and outreach to new families.

 

The RTS Community is strong, loving and resourceful.  Please be an active participant.

 

John Kimmel

Chair, RTS Foundation

 

Announcements

Participate in our 2015 prize calendar fundraiser by clicking here.

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RTSF merchandise is now available! Pick yours up and support the Foundation!

 

http://rtsfoundation.qbstores.com/

 

 

 

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Mailing Address

Rothmund-Thomson Syndrome Foundation

4307 Woodward Court

Chantilly, VA 20151

Email us at

rtssupport@rtsplace.org