RTS Newsletter
August 2023

To inform, educate and empower all those whose lives are touched by RTS

Summer Issue
No. 2

www.rtsplace.org
2023 RTS Live Sharing and Caring Conference – A Major Success for RTS Families!

On the last weekend of this past April, RTS families, board members, invited guests and conference presenters descended on Portland, Maine,in anticipation of the first live RTS Sharing and Sharing Conference in several years. Gone were the days and limits of web-based conferencesthat held everyone captive for the past three years due to the COVID-19 pandemic. At this year’s live conference, RTS families were able tofreely interact, catch up with old friends, provide support to each other, share meals and enjoy their time together in person. Children playedunreservedly and forged budding relationships and bonds that they may cherish for a lifetime. In the time between and after the formal conference
schedule families spent time enjoying the hotel’s swimming pool, going out to dinner, and touring Portland’s many scenic sites. In many ways, theconference served as a vehicle for RTS families to experience the much-needed social contact and support that has been missing due to theCOVID-19 isolation. It was heartwarming to see and be part of something that felt so deeply meaningful and yet so natively organic.
The conference program this year included presentations on various
RTS related topics including RTS Management Guidelines andHistorical Overview by Lisa Wang, MD, Skin Manifestations in RTS,Moise Levy, MD, and Family Systems and Stress Management, Emil
Zakutny, PhD, DSW. In addition, the RTS community was introduced
to the emerging importance of patient registries and how to integratepatients, doctors and researchers using these registries. As discussed atthe conference, this has significant implication for the future of the RTS
Registry in terms of identifying a patient registry that best meets theneeds of the RTS community.
At this year’s conference, the Sharing and Caring part of theconference was supplemented by a panel comprised of several RTS
patients ranging in age from their teens, twenties to adulthood whoshared their RTS lived experiences and responded to specificquestions from the audience. This resulted in a compelling experiencefor participants. A post conference anonymous survey revealed oneattendee’s feelings (see below) about the panel experience, while
another shared what they felt was the best part of the conference.
RTS Group Panelists‘The panel this year was by far the best part of theconference. Just an open, interactive discussion
about RTS, about what they deal with, or other parents deal with in day-to-day life’‘I always love the time toconnect with otherfamilies’

RTS Teen Superheroes!!

Letter From the RTS Board Chair
As of this writing, I will be ending my tenure as the RTS board chair at the end of this August. I
am grateful to the RTS Board members for their support and for our collaborative work toactualize the mission of the RTS Foundation. To that end, some of the accomplishments of theboard include organizing the first post Covid-19 live Sharing and Caring Conference, recruiting
several new board members, publishing the quarterly RTS Newsletter and a maintaining a
successful yearly fundraising campaign for the past two years to support the RTS Registry andrelated research conducted by Lisa Wang, MD, at the Texas Children’s Hospital.
Of course, much work remains to be done over the course of the next few months and years
ahead. This includes increasing RTS awareness via a more a robust social media footprint andpresence, expanding fundraising opportunities and resources to support the RTS Registry andrelated research, and identifying a patient registry that would integrate RTS patients, doctors andresearchers in a way that would lead to meaningful treatment options for RTS patients and benefit
their families and the larger RTS community.
My departure as the RTS chair is a planned one, allowing the new chair of the board, Staci
Hansen, to transition in an organized way. Staci, who has been a board member for the past several years, is an energetic and very talented
individual in whom I have the utmost confidence. I believe that with her leadership, and the addition of several new board members, there
is a synergistic potential that, I believe, will benefit the RTS Community.
It has been my privilege to serve as the RTS Foundation board chair. While I will continue to be involved with RTS in some capacity, I am
grateful to the many people that I have met from the RTS community over the past decade that touched, inspired, and humbled me withtheir quiet courage and uplifting optimism. Thank you and all the best.
Sincerely,
Emil Zakutny, PhD, DSW

New RTS Board Members
Sylvie Plante hails from Canada, the French province specifically. She is a parent with three children and one ofwhom, Lea, a beautiful 18-year-old woman, has RTS. Sylvie recently joined the RTS board in the role of the board
secretary. Among her many reasons for joining, her lived experiences as a parent of a child with RTS, have strongly
influenced her thinking and beliefs about RTS and life in a broader sense. She puts in philosophical terms as she
asserts that it is best “with time passing by so quickly, to stop being afraid of RTS, stare it in the face and just deal
with whatever comes your way.” She hopes to bring this resilience-based perspective to her work with RTS and thelarger RTS community, as well as helping with fundraising efforts and bringing awareness to RTS. We welcome
Sylvie to the RTS Foundation and wish her much success in her new role as the board secretary.

Sean McMurray currently lives in sunny Southwest Florida. He is the father of two sons. Sean was diagnosed
with RTS as a baby and has lived through some of the common challenges that RTS patients encounter during theirlife. Sean attended the first RTS conference about 15 years ago. He brings his interest in supporting RTS research,his lived life experience as an RTS patient, as well as twenty plus years of Medical Device Industry experience tohis role as a board member. He is particularly eager to participate in strategic efforts to actualize the goals of theRTS Foundation to meet the needs of RTS patients, their families, and the larger community. From the perspectiveof a father and a patient diagnosed with RTS, he believes that “you can't let RTS define you, it's just somethingthat is a small part of who you are”. We equally welcome Sean to the RTS board and wish him much success in
his new role.

2023 “I Love Lucy" RTS Fun Run!
August 13, 2023, is the LAST Day to get your free T-Shirt.
Sign-Up Today
We have a new design for the 2023 "I Love Lucy" RTS Fun Run shirt! This year’s
virtual fun run is going to be one for the books. This evening, at dinner, Lucy looks
at Jason and I and says, "Is everyone going to do my run again this year?" How canwe let her down! I asked her after she said this, "do you know why we have therun?" She responds quickly, "FOR RTS!" She gets it!
This has quickly become an event she looks forward to. We just celebrated Lucy's
5th birthday with a BANG! She is fiercely independent, smart, brave, and always
trying to make those around her smile! Let's all repay the favor and put a smile onher face by signing up for this year’s run and making it the most successful virtual
run yet!

Sign UpDonate

More Memories From the 2023 RTS Sharing and Caring Conference

The Rothmund-Thomson Syndrome Foundation is a 501(c)(3) nonprofit organizationwww.rtsplace.org
email: support@rtsplace.org