NEWS FLASH: RECQ2016 IS A GO!

The National Cancer Institute and the National Institute for Aging are providing partial funding for the first international meeting to gather scientists and clinicians studying all of he RECQ helicases and unite them with patients, families and caregivers affected by the RECQ disorders.  This includes Rothmund-Thomson Syndrome, Bloom's Syndrome and Werner Syndrome. The Fred Hutchinson Cancer Research Center in Seattle has offered to host RECQ2016, 28-30 May 2016.

 

The three-day meeting will include shared keynote presentations each day for all registered attendees, concurrent Scientific and Patient/Family Sessions, and shared Panel discussions.  The Patient/Family Sessions are being modeled on the RTS Sharing and Caring Conferences that we have held yearly since 2012. Patient/Family Sessions will provide overviews of the specific RECQ Syndromes, discuss syndrome-specific issues, and general issues associated with genetic and chronic disease care and quality of life.

 

If you/your family are interested in participating in the Conference send an email to rtssupport@rtsplace.org by 8 February in order to be considered. Space will be limited.  To be considered the patient must be registered in ongoing Clinical Studies with Dr. Lisa Wang, at the Baylor College of Medicine.  The RTS Foundation will assist in covering registration fees, lodging costs, and the possibility of limited travel expenses. We will not be able to fully fund all travel expenses associated with attending this conference.  As with past conferences, participating families will be expected to actively participate in discussions and, in some cases, present a short briefing on how your family deals with the challenges associated with RTS.

 

Thank you and we hope to see you in Seattle.

 

John Kimmel

Chair, RTS Foundation

 

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

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

 

http://rtsfoundation.qbstores.com/

 

 

Support Rothmund-Thomson Syndrome Foundation's AmazonSmile donations by using the following link to shop at

 

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Mailing Address

Rothmund-Thomson Syndrome Foundation

4307 Woodward Court

Chantilly, VA 20151

Email us at

rtssupport@rtsplace.org