The Noonan Syndrome Support Group, Inc.
Together, we can solve this puzzle.
March 8, 2013
Hello and thank you for your support of The Noonan Syndrome Support Group over the past sixteen years. We are sad to announce that the TNSSG, Inc is being dissolved and because we were unable to secure funding, we must also cancel our participation in the 2013 Orlando Conference. However, the RASopathies Foundation and their Noonan Syndrome Community division request that you keep your travel arrangements/reservations, as they are currently trying to find a way to host a Noonan syndrome conference, in Orlando, Florida this summer from July 31 through August 4 at the Renaissance in Sea World (see details below).
Regarding the current upgrade of the TNSSG, Inc website, to date $3,577.75 has been paid to The Positive Development Company, Santa Ana, CA. If practicable to do so the upgraded site could be transferred and brought to fruition.
Here is a link to the most recent (pdf document) Noonan syndrome Parents Guide. Thank you to everyone who make this paper a reality
Below is a letter from the RASopathies Foundation, who is not taking over the TNSSG, but will continue to provide services to both the Noonan syndrome and RASopathies community.
PO Box 145
Upperco, MD. 21155
Greetings To Our Noonan Syndrome Family,
On Sunday afternoon, the RASopathies Foundation was informed that the Noonan Syndrome Support Group (TNSSG) would be dissolving. At this time, we were also asked to host a Noonan Syndrome Conference this summer in Orlando, Florida. Our volunteers have been working tirelessly, round-the-clock, to piece together conference information. At this time, the RASopathies Foundation requests that you keep all of your travel reservations. The Foundation is 95% sure that we will be able to host a Noonan Syndrome Conference, as scheduled, this summer. However, doing so will require help from the community.
With zero financial support, and the daunting task of funding a large conference, we will need the community to help us fundraise from donors, corporations and more. We believe in you, our Noonan syndrome community, and know that with your support, we can plan and pay for a conference that is less than five months away. What can you do to help? Please let us know if you will be attending the conference, and how many people will be in your party. Also, stay tuned as we will need your help fundraising. Again, we are 95% sure that the RASopathies Foundation will host a Noonan Syndrome Conference this summer, and we will have all the details to you one week from now (including a link to register online).
We know that this is all quite a big change and can understand that you may be confused or disappointed, so we want to tell you more about the RASopathies Foundation and the ways we can help you and our entire Noonan syndrome family. The RASopathies Foundation includes a division called the Noonan Syndrome Community. Our organization is run by a group of 25 volunteers who also consider themselves members of the RASopathies community.
We've worked hard to build an organization that is moving forward with exciting momentum. We're proud to offer the Noonan and RASopathies communities a place to connect, a place to reach out for support and a place to learn. In fact, tonight we are hosting one of our monthly webinars. This webinar focuses on Noonan syndrome and will be presented by Dr. Bruce Gelb. To register, please visit https://attendee.gotowebinar.com/register/1636514554646095104. For a more detailed list of our services, please visit us online:
RASopathies Website: www.teamrasopathies.org
Noonan Syndrome Website: www.teamnoonan.org
Online Support Group: https://www.facebook.com/groups/rasopathies/
As parents of children who have a RASopathy syndrome, our vision for this organization has been and will continue to be, to raise awareness until the words “RASopathies” and “Noonan syndrome” are understood in every household (and especially every doctors office), raise the significant funding needed to find effective treatments for our community and to provide caregivers with the vital information they need to care for their children.
We are both excited and honored to welcome you all to our community. I hope you will reach out to us if you have any questions, concerns or ideas. Here at the RASopathies Foundation, we believe in what it means to be a team, and together we will make a difference for our children and ourselves.
In closing, we would like to thank Brenda Conger, Sandra Taylor, Lisa Schoyer, Martha Goodwin, Ann Yurcek and our volunteers for your support over the past three days. You have provided us with the guidance and tools we need and we are so grateful for your support.
Julie N. Jancius, Lisa Schill & Monica Grund
RASopathies Foundation, Board of Directors