Recap of Upstate NY CMT meeting with MDA: Our guest speaker, Pat Pfeifer, MDA Health Care Service Coordinator for NENY and Vermont shared information on healthcare services offered by the MDA. *Clinics -MDA maintains a network of 200 specialized clinics across the United States and in Puerto Rico. There is a local MDA clinic at the Albany Medical Center Hospital if you register with the MDA and visit Drs at the MDA clinic the grant provided by the MDA may cover your copays. The MDA health care service coordinator, Pat Pfeiffer, is usually present on clinic days to answer questions, distribute MDA educational materials, coordinate any MDA services you may require and assist with community resource referrals. *Summer Camp -At MDA camp, kids with neuromuscular disease discover a world created specifically for them, and meet many other kids sharing the same needs and experiences. MDA camp offers a fun and safe outdoor experience, along with opportunities to engage in a variety of activities such as horseback riding, swimming, adaptive sports, arts and crafts, camp dances and much more. For parents and guardians, MDA camp provides a brief break from their roles of caregiver for a child with neuromuscular disease. Thousands of youngsters attend MDA summer camp each year at no cost to their families. For more information about supporting MDA camp in your area, please contact your local MDA office *Advocacy - In September 2007, MDA launched a formal National Advocacy office to effectively project the voice of our MDA community, and protect the interests of the individuals and families they serve. The program has two goals: be an effective voice for the hundreds of thousands of Americans served by MDA through representation in matters of public policy and research advancement; and encourage and facilitate active involvement of people with neuromuscular diseases in the community at large, as well as in matters of public policy that are of specific concern to those with disabilities *Durable Medical Equipment -As neuromuscular diseases progress, MDA clinic team members are prepared to recommend and prescribe various types of medical equipment that can increase independence and quality of life. When such equipment is needed, MDA offers assistance in obtaining prescribed items through its national equipment program and referrals to community resources. MDA also assists with repairs to medical equipment used in connection with a neuromuscular disease. *MDA Muscle Walk-CMT Team Upstate NY CMT Join us for the MDA Muscle Walk. Event Date: February 2nd, 2014 Event Time: 9:30 AM - 12 Noon Event Location: SEFCU Arena Please help us cross the finish line and FINISH STRONG together as a team. Join us for the Muscle Walk and we’ll have a great time for a great cause. You can also make a donation today, and help us reach our fundraising goal to support the families who depend on MDA. Together, we grow stronger. Team Upstate NY CMT - Join Team https://secure2.convio.net/mda/site/TRR/Walk/11-316-AlbanyDistrict/1028407638?pg=ptype&fr_id=5429 Donate to our Team: www2.mda.org/site/PageServer?pagename=walk_team_donate&fr_id=5429&team_id=21590 Next meeting is scheduled for March 8, with open discussion to share whatever’s on you mind. Rich Piche, co-facilitator, reminded everyone about the CMTA’s webinars with a new one each month. Visit here to sign up: cmtausa.org/index.php?option=com_content&view=category&id=48&Itemid=216 Presenters will be covering a wide variety of topics intended to inform and educate everyone about CMT, but if you have a suggestion for a particular topic, please email [email protected]. Also, visit our Upstate NY CMT Support and Action Group on the CMTA website:cmtausa.org/index.php?option=com_community&view=groups&task=viewgroup&groupid=58&Itemid=15 and JOIN the group for FREE
Posted on: Sat, 18 Jan 2014 22:15:31 +0000
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