Marfan Life and History Fundraiser Meet Our Chapter Leader
Jon Rodis had over 20 years experience in business management/consulting with 8 years in senior management positions. He worked as a Business Development Manager for MyKroWaters, a family run environmental firm until becoming permanently disabled in the Fall of 2001. Since that time, Jon has been involved with several Marfan awareness initiatives. Among them, Jon created a website on his experiences with Marfans and wrote a Disability Checklist that was featured in a Winter 2005 issue of the NMF’s Connective Issues. Jon, along with his wife Kathleen, has helped many people get approved for SSI and SSDI in the early stages of the process. He is currently the President of the Massachusetts Chapter and Chair of the Chapter’s ‘Physicians Awareness Committee’. Jon has dedicated his life to spreading the word on Marfans and doing whatever he can to improve the lives of those who are affected. Contact Information
Contact:
Jon Rodis
617-846-4975
jrmarfan58@aol.com Cindy Robillard
508-854-0852
cwicklein@hotmail.com Description of the Group Our group is comprised of families with young children, teens, young adults and parents who are affected by Marfan syndrome, Loeys-Dietz or a related connective tissue disorder (either personally or as a parent of an affected child). We are committed to supporting one another in every facet of our work, whether it be through our quarterly support meetings (“Heart to Heart”, various fundraising events throughout the year, the several awareness initiatives ( such as the “Physicians Awareness Committee”, the “School Nurse Program” and EMS/EMT presentations) or through telephone and e-mail networking.
With the help and support of the Chapter’s Board of Directors, President Jon Rodis, Vice-President Richard Saltus, Treasurer Lincoln Kaiser, Secretary Kelly Danforth, and Director’s Inez Steele, Kaddy Ackroyd, Lauren Barletta, David Donato, Wendy Janett, Ben Weisman and Danielle Stapelton , the membership has a strong team to rely upon. Meeting Locations
Children’s Hospital Boston at Waltham, 9 Hope Avenue, Waltham, MA
Jon and Kathy Rodis’s Home, 45 Pearl Ave, Unit #3, Winthrop, MA Spillane Law Offices, 1140 Washington Street, Hanover, MA Stephen Flagg's Home, 20 Maple Ave, Woburn, MA Upcoming Meetings and Events September 25, 2010 - "MA Chapter Annual Get Together" from 1pm to 5pm
Location: Jon and Kathy Rodis’s Home, 45 Pearl Ave, Unit # 3, Winthrop, MA (details)
October 24, 2010 - Chapter Board of Directors Meeting from 10am to 12pm
Location: David and Erin Donato’s Home, 19 Daniels Road, Framingham, MA (details)
October 24, 2010 - “Heart to Heart” Support Meeting from 12pm to 2pm.
Location: David and Erin Donato’s Home, 19 Daniels Road, Framingham, MA (details)
Announcements
Here is the Celebration of Marfan Life and History Fundraiser flyer. Please distribute the flyer to your family, friends, colleagues, doctors, nurses, businesses, etc. The "Silent Auction' items alone are going to be a big draw for the event, but with all your help and support, their is no telling how much awareness we can raise and how much more money we can get for future support efforts. Chapter News Physicians Awareness Committee Update-Four Years and Counting
Physicians Awareness Committee Letter
The Massachusetts Chapter met for the "MA Chapter Get Together” on Sat., September 26th.
The following are the MA Chapter "Updates' that I announced at our "Get Together':
~The MA Chapter was recognized by the NMF at this years Conference with a "Heartfelt Recognition Award"
for raising over $21,000 at this summers performances of RENT in Boston. Thanks to Inez Steele, Rene Jones, Kaddy Ackroyd and many other who volunteered for their time, effort and support.
~Within the week, the MA Chapter should have it's official web page listed on the NMF's Website. We hope to utilize this great resource to keep our members up to date and well informed.
~We discussed the extremely encouraging report of "Long Term Results of Aortic Valve Sparing Operations in Patients with Marfan Syndrome' by Dr.Tirone David and his colleagues at Toronto General Hospital, University Health Network and the University of Toronto.. They concluded from 18 years of study, that aortic valve sparing operations provided excellent clinical outcomes with their patients with Marfan syndrome.
~The next NMF Conference will be held on July 8-11 in Houston, Texas and will be hosted by the Baylor College of Medicine and the University of Texas Health Science Center.
~In lieu of the NMF's next 'Connective Issues' newsletter, I offered everyone a copy of my Rochester Conference notes for those who were not able to attend and also people who did not attend the workshops that I had.
~On a sad note, I mentioned the passing of Eileen McCarthy this past week. Eileen had been one of the original Board members of the MA Chapter.
~On September 16th, Dr Ron Lacro presented at the Pediatric Grand Rounds of the Newton Wellesley Hospital on behalf of the Physicians Awareness Committee (PAC). Since the PAC's formation in May 2005, the PAC medical team of Dr's Ronald Lacro, Micharl Murray and Michael Singh have presented to over 315 doctors and medical specialists at 8 hospitals across Massachusetts. We are extremely lucky to have such a great team of doctors who treat, care, comfort and support our community in so many ways. The Chapter thanks them whole heartedly for all that they do. 
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