Update from Massachusetts General Hospital - Myhre Clinic
We received some amazing news yesterday. Myhre supporters have raised enough money to reach our first goal in support of MGH's care of Myhre Syndrome patients. The Foundation we are forming had these new initiatives as our initial goals. With your generous support these goals are already achieved! Below is a letter from the leader at the clinic.
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Dear Friends of Myhre syndrome
Although you know each other, I am sending this “BCC” to the few parents who have been most active in philanthropy. You can reveal your identity in your reply, if you wish.
(1) I’m happy to introduce Emma Snyder, B.A., the new Myhre Syndrome (part-time) research assistant (RA). Emma is a 2018 graduate of Scripps College (Claremont, CA), whose hometown is Portland, OR. Since August 2018, she has been an outstanding RA for both the MGH Turner syndrome and Klinefelter syndrome clinics (50% each). Her maturity, initiative and skills are superb, and when I was considering hiring a RA for Myhre syndrome, I asked her if she could handle a little more work. I was thrilled when she accepted. The first task will be to develop the REDcap database, which is the standard of medical research. She not only improved the Turner syndrome DB (over 200 patients), she also started the new one for Klinefelter syndrome, and would be ideal to create the Myhre syndrome version. We start next weekend! Emma is more than a data person. She has a terrific clinical appreciation, and has met two of our patients.
Funding Emma will be the first expenditure from the Myhre Syndrome Fund, all of which has been donated and/or raised by you. We can’t thank you enough for your support as we continue to grow the Myhre syndrome clinic and I look forward to continuing to keep you updated.
(2) Another major development: Dr. Lindsay can now move ahead to develop our own mouse model. We are thrilled to use your fund for this purpose which will jump-start our bench research.
(3) In addition, I am working with an innovative genetics fellows to create 3 YouTube teaching videos. A modest honorarium will be provided.
(4) Finally, I submitted an abstract about the “Vasculopathy of Myhre Syndrome” to a genetics meeting to be held in August in Utah. Acceptance notification will be emailed at the end of May, and I’ll let you know if I will present our important research about blood vessels and the aorta.
In summary, we will use this fund for patient and family issues, education and research, many of which overlap. You are welcome to share the news!
Let me know how to communicate in the future, since I will send program updates every 1-2 months: Send to one point person? Or a group list? Whatever you prefer.
Have a good week, with profound gratitude,
Angela
Angela E.Lin, MD
Professor of Pediatrics, Part-Time, Harvard Medical School
Professor of Pediatrics, Part-Time, Harvard Medical School
MGH Myhre Syndrome Clinic (Co-Director with Mark E. Lindsay, MD, PhD)
Medical Genetics, MassGeneral Hospital for Children
175 Cambridge St., Boston, MA 02114
(617) 726-1561; 643-3133 FAX (617) 726-1566
175 Cambridge St., Boston, MA 02114
(617) 726-1561; 643-3133 FAX (617) 726-1566
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