Meet Our Chapter Leader
Contact Information
Description of the Group
Meeting Locations
Upcoming Meetings and Events
Announcements
Chapter News
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
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 individuals and 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 David Donato, Treasurer Lincoln Kaiser, Secretary Harrison Farnsworth, and Directors Kaddy Ackroyd, Barbara Amberg, Wendy Jannet, Shauna Morrissette, Richard Saltus and Ben Weisman, 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
David and Erin Donato’s Home, 19 Daniels Road, Framingham, MA
Ben and Lindsey Weisman’s Home, 19 Buchanan Road, Salem, MA
Spillane Law Offices, 1140 Washington Street, Hanover, MA
Stephen Flagg's Home, 20 Maple Ave, Woburn, MA
Upcoming Meetings and Events
January 22, 2012: "Heart to Heart" Support Meeting (details)
February, 2012: 4th MA Chapter Raffle and 2nd Hang a Heart
April 22, 2012: "Heart to Heart" Support Meeting (details)
May 5, 2012: Memorial Dinner for Joseph Contois (details)
July 15, 2012: "Heart to Heart" Support Meeting (details)
August 2-5, 2012: NMF Conference, Chicago, Illinois
September/October 2012: New England Marfan Symposium (DHMC)
September 22, 2012: MA Chapter Annual Get Together (details)
October 21, 2012: "Heart to Heart" Support Meeting (details)
Fall, 2012: Casino Night
Announcements
All told, we raised over $10,000 in net profit from our CMLH I and CMLH II events. As part of our Conference Scholarship Program, and with the help and support of so many of our members and their families and friends, we have been able to assist NMF members from Massachusetts, New England and all over the United States to attend the 2011 NMF Conference in Oregon along with next year's 2012 NMF Conference in Chicago.
Here is the Celebration of Marfan Life and History Fundraiser flyer that was used for the inaugural event in May 2010.
Chapter News
Chapter Update - February 2011
Chapter Update - March 2011
Chapter Update - April 2011
Chapter Update - May 2011
Chapter Update - July-September 2011
Chapter Update - October-December 2011
Physicians Awareness Committee Update-Four Years and Counting
Physicians Awareness Committee Letter
The Massachusetts Chapter met for the "MA Chapter Get Together” on Saturday, September 24th.
Following are a few of the things that were discussed:
- Everyone had a nice time at the MA Chapter BBQ in Methuen (on August 21st) at the home of Jennifer and Randy Levesque. We were happy that the rain held off and we were able to enjoy the day together.
- The MA Chapter was recognized again for our fundraising efforts by the NMF at this year's conference in Portland, Oregon, with a "Heartfelt Recognition Award".
- The next NMF Annual Conference will be held on August 2-5, 2012 in Chicago, Illinois. More information will be coming. For now I just ask everyone to "save the date".
- Physicians Awareness Committee Update: Since the PAC's formation in May 2005, the PAC medical team of doctors Ronald Lacro, Michael Murray and Michael Singh have presented to over 550 doctors and medical specialists at ten hospitals throughout Massachusetts, New Hampshire and Vermont. 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 wholeheartedly for all that they do.
- The list of "Upcoming Meetings and Events for 2012" will be sent to everyone in October.
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