Matters of Heart: August 2018
Meet the incoming LDSF President: Dawn Reiner
I first connected with the Loeys- Dietz Syndrome Foundation when my daughter, Nicole and I attended the 2010 conference. Nicole had her LDS diagnosis for just under three years and we felt so isolated in California. Not only had we never met anyone else with the syndrome, but most of our doctors had never heard of it and there was such little information at that time. On our first night in Baltimore the day before the conference we went to PF Changs for dinner and sitting at the table in front of us was this adorable little girl who had similar features to my daughter. I walked up to the mom and said, "Are you by any chance in town for the Loeys-Dietz Conference". And they were. Nicole and Mercedes and Eden and I were inseparable all weekend. And although we lived in California and they lived in New Mexico we stayed in constant touch. It was so comforting to have someone else to talk to about my worries and concerns for Nicole and for my daughter to have a new friend. The 2010 conference was small and there were only a few doctors who presented. But boy did I learn a lot. I feverously took notes that I sent to my husband and daughter's pediatrician. I felt I could better explain LDS to friends, family and doctors. Fast forward to 2014 where once again, Nicole, my husband and I flew to Baltimore for another conference. I was so blown away by this conference with three times the amount of people and so many presenters. Once again, we made new friends and started to feel part of the LDSF community. I learned from Raquel, the incoming LDSF president at the time, that the board was losing members and that it took so much work to put on the conference, that they may not have another. I knew right then and there I could not let this happen and by the end of the conference I told Raquel I wanted to get involved with this amazing foundation and help run the conference.
I have now sat on the LDSF board for four years, have co-chaired the 2016 and 2018 conferences and as of July was installed as the foundation's 5 th president. My focus for the next two years is to keep our mission of building committee, funding research and educating the professional and lay communities through foundation sustainability. The LDSF operates because of nine amazing volunteers that live around the country. We are currently focusing on expanding our work by bringing in additional volunteers through our five committees; conference, fundraising, community outreach, education and marketing. These committees are a wonderful way for you to make a difference and help a cause that is near and dear to all of our hearts. Please reach out to me with any questions or for more information on how you can get involved at firstname.lastname@example.org. In closing I want to share one of my favorite quotes by Helen Keller, "Alone we can do so little, together we can do so much."
Have you wondered or been asked...how many people have Loeys-Dietz syndrome?
We would like to start answering this question and need your help. Please participate in the attached survey to help us understand how many individuals have LDS and where they live. There is a US version and an International version. This will also help us be able to make local connections!
Please take a few minutes to answer some brief questions about your family:
Interested in an easy way to support LDSF?....Set it and forget it!
In July, we had ten incredible donors register as "recurring donors!" Super easy, just set up an automatic monthly charge through our donation platform.
This August, we are looking to match those July donors with TEN more recurring donors!
https://loeysdietz.wedid.it/ (Just select pull-down to monthly or quarterly!) Thanks to all our generous donors that help raise funds to support conference, research and other activities!
Make sure to check out back to school resources at www.loeysdietz.org!
School packet: As a parent of an LDS child, knowing how to communicate with your child's school can be challenging. Find a sample letter, emergency information and school-specific facts in this PDF packet to help open the lines of communication between you and your child's educational institution.
Emergency Alert card: We hope this tool will help patients/families to always have on hand a source of information regarding Loeys-Dietz syndrome, as well as their personal medical information. If that information is used by first responders in an emergency situation, or just as a quick reference at a doctor's appointment; we think this could be a very valuable addition to your wallet, purse, or pocket.