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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

 

 smile.amazon.com!

 

 

Please Support RTS Research!

 

Dr. Wang and Ta-Tara Rideau are working on a new project involving patients with RTS who have developed osteosarcoma.  Through the years they have lost contact with many families and asked the Foundation if we would reach out on their behalf.  They are trying to gather tumor-specific information for the project and request that patients currently (or previously) diagnosed with osteosarcoma contact Ta-Tara via email = TLRIDEAU@txch.org.  This is time sensitive, so please reach out to Ta-Tara as soon as you can.  This is a step in the process of securing grants from the National Institute of Health (NIH) to further our understanding of RTS.

 

 

Announcing 2018 RTS Sharing and Caring Conference

 

The RTS Foundation is pleased to announce that this year's Sharing and Caring Conference will be held at the Double Tree Suites Hotel, Salt Lake City, Utah on 6-7 October 2018. We have secured rooms at a reduced rate for arrival on Friday, 5 Oct, and checkout on Monday, 8 Oct.  As in past conferences, the Foundation will provide 2 to 3 nights lodging for participating families.

 

The goal of this conference is to educate, promote awareness, and foster camaraderie and discussion among patients and families affected by RTS. As with past conferences we will have presentations by Dr. Lisa Wang and other medical professionals. We also encourage participating families to make presentations about their life with RTS.

 

We will offer refreshments in the Atrium between 6-9 pm on 5 Oct, to give families an opportunity to introduce themselves before the conference starts.  The room rate includes daily breakfast, and we plan on starting the conference at 9 am on 6/7 Oct. We will provide catered lunches both days and plan on completing the formal conference agenda by 4 pm each day.

 

While this conference is one of our most important activities for the year, our budget has been significantly reduced due to other issues facing the RTS Community. Support and funding for medical research on rare diseases is extremely limited.  In 2016, Dr. Lisa Wang's grant funding for RTS clinical research ended. Her lab is one of the only ones in the world doing clinical research to help RTS patients and families. Many of you have probably spoken to Dr. Wang to learn more about RTS and how it affects your family. While she works on new grant applications, the foundation has committed to providing fiscal support for her research.  We also plan on continuing support for genetic testing for families in need.

 

We would like to see maximum attendance at the conference, but we must be selective in allocating financial assistance to families.  Priority will be given to families who have not been able to attend earlier conferences and to families who are participating in RTS clinical research with Dr. Wang.

 

I am amazed at the number of families who have chosen NOT to participate in this research. Dr. Wang’s team is committed to helping patients with RTS, but without participation by families, this is not possible. In recent years tremendous gains have been made in linking RTS to the RECQL4 gene. However, absence of the mutations in RECQL4 does not necessarily mean that the patient does not have RTS, since one-third of patients clinically diagnosed with RTS do not have mutations of this gene. We have so much more to learn, and we need every family’s help. It is the RTS Community’s responsibility, not only to tell each other whom to call to get information for their own particular case, but to participate in and invest in research. Without enrolling, all the information learned about and discussed with individual families and their doctors is not captured, and the field as a whole will not grow and move forward.

 

Please let me know if your family is interested in attending this conference. We have contracted for 17 rooms and there is a big conference going on in SLC that same weekend. Our ability to get additional rooms will be severely limited by the end of June.

 

Thanks again and I look forward to seeing you in October.

 

John Kimmel

Chair, RTS Foundation

 

 

RTS SPARTAN TEAM FUNDRAISER

 

Many thanks to Kimberly Preston and her teammates who spent six months fundraising for the event which took place on November 4th  at Fenway Park. The RTS (Rough Tough Shauna) Spartan team did an amazing job, had a ton of fun, and raised a lot of money for and awareness of Rothmund-Thomson Syndrome.

Critical Years for Rothmund-Thomson Syndrome Foundation

To read a letter from the RTSF Chairman click here.

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.

 

 

 

Mailing Address

Rothmund-Thomson Syndrome Foundation

4307 Woodward Court

Chantilly, VA 20151

Email us at

support@rtsplace.org