A conscientious group with great leadership. Instrumental in spreading the word about a very rare syndrome that needs much more attention world wide in terms of research, education, awareness and perhaps someday a cure!
I am very grateful for the RTS Children's Foundation as a valuable resource for families with RTS kids.Not only does it provide funding for annual family reunions,but it also seeks
and inquires about medical researchers willing to devote time and energy to finding treatment for certain aspects of RTS if funding can be provided.
The family reunions are the most immediate benefit to our family as we are able to give and receive much needed emotional support and share practical ideas,with the help of a
program facilitator,to better manage the behavioral and physical challenges of life every day.
RTS Children's Foundation is a provides great support for families. From the annual reunion events (a favorite go to for the whole family) where you go to to make life time friends who share advise, experiences, good times and hard times.... it's a Foundation that works to stimulate research and keep those impacted up to date with any new research or learnings. Thanks you to RTS for reminding me and all families we are not alone.
They have done a lot of research on the rare syn.a lot of young parents are scared when they have a child with this rare syn. They have conferences, to get these families together with other families,with the same experience. It is an experience for the children, the first time we went to a Rubinstein taybi Gathering,our daughter was 9 yrs.old.when we drove up to the hotel she said mommy that baby has the same thing I do. Sure enough the young mother with a 9 month old walked in the conference room. Families have come that said they were scared to come,but till the weekend was over we were family. And do not want to miss one meeting.
This is a great way to meat and share experiences and happenings in our lifes. A very important community in wich we share important info regarding health issues, therapy etc.
A wonderful foundation aimed at helping families affected by this syndrome. They provide latest updates of any advances made toward this syndrome as wel funding research in an effort to help our children . Very grateful for this!
My nieces baby was born with this syndrome, I had never ever heard about it before then. How can they find meds thst help and a cure for it if it is so unknown.
We founded the RTSCF to be a positive catalyst for family outreach and medical research and in 2014, we raised over $41,000 bringing our cumulative fundraising to over $250,000 in just four years. Moreover, over 99% of these funds were raised from corporations and individuals outside of the RTS community.
The journey thus far has been education so I thought I'd take this opportunity to update folks on the details and how it shapes our current thinking of the future...
Fundraising has exceeded our expectations but we have also learned that a dedicated RTS research initiative will require a fully–funded, multi–year commitment to attract full–time resources. In plain English, its the annual cost for a lab researcher (compensation, lab costs, and overhead) and since most people appreciate a little job security it is preferred that either (1) at least 2+ years of costs either can be funded in full, upfront OR (2) we have a fundraising track record well in excess of the annual cost of the researcher. As you can imagine, the bigger the financial commitment, the more qualified the team we can attract (e.g., a 5-10 year commitment would probably be a pretty exciting opportunity for researcher). I estimate we will need $1-2MM to comfortably "get started" on advancing the work of Dr. Eric Kandel (Columbia), Dr. Haggarty (Mass. General CHGR), or Dr. Li-Huei Tsai (MIT-Picower).
Now this is not an insurmountable figure but it reminds us this is a marathon, not a sprint. To win a marathon, one must pace themselves and so we've embraced a three–prong approach for deploying the RTSCF's scarce financial resources in a manner to provide maximum, on-going impact:
1) NEAR-TERM BENEFITS. Supporting family outreach by sponsoring events such as the Northeast Family Reunion organized by Brenda Bon Levine or RTS-focused charities such as the Special Friends Foundation www.facebook.com/SpecialFriendsFoundation. We find family reunions are a source of emotional support for the parents (especially new parents) and a venue for sharing practical knowledge of the care of our RTS children. We'd like to expand our donation efforts in 2015 so keep us in mind.
2) INTERMEDIATE TERM GOALS. Identifying smaller RTS-related research initiatives such as keloid scarring, dietary needs or gastrointestinal issues that can be funded from current resources (e.g., a $50,000 study). We find RTS parents are often looking for solutions to "everyday problems" and advances here may yield significant gains in the quality of life for many families.
3) LONGER-TERM GOALS. Searching for a major donor or co-sponsor of a full-time research initiative. This could come in the form of soliciting funds from Government programs (e.g., National Institute of Health), university or medical facilities, or even a private individual. We have had preliminary conversations with one such person (who feels he alone or in concert with friends could make this investment) but we're a long way from success. Bottom line, we're optimistic we can ultimately devise a program in conjunction with a research institution that might address the larger question of reversing some of the cognitive deficits of RTS but it is perhaps our most complex initiative.
To be clear we are NOT giving up hope on supporting high-level research focus on reversing the cognitive deficits of RTS, for lack of a better term lets call this "the cure" (e.g., Dr. Eric Kandel's ability to eliminate ~80% of the cognitive deficits of mice afflicted with RTS). Rather, we acknowledge that the financial commitment to pursue this lofty goal and this goal alone, is so large relative to our current size and annual fundraising it would starve support for other initiatives that have a more immediate benefit to the RTS community.
Accordingly, we felt it would extend our resources and better serve RTS families if adopted a tiered approach that serves immediate (family events), intermediate (symptom-specific research) and finally long-term (cognitive deficit research) needs. The benefit of this balancing act is to maintain a source of funds to support family reunions now and well into the future without forsaking the opportunity to fund or at least stimulate RTS-focused research now and in the future.
Hopefully this discussion illuminates the balancing act we face. I encourage each and every one of you to think about projects we can explore in 2015+ that would benefit the broader RTS community. Perhaps we a website to centralize (private) discussion and information? Or dietary advice from a nutritionist familiar with RTS kids? Or a conference call with surgeons familiar with correcting the angulated thumbs, etc.)? I welcome your suggestions.
千里之行，始於足下
"A journey of a thousand miles begins with a single step"
-- Lao-tzu
Thank you for your interest and I wish you all a healthy 2015.
Jeff Donnelly
Founder & Trustee