How do we influence medical students to consider taking on muscular dystrophy as a doctor - or at least understand the way it affects families and the impact it has medically/emotionally/socially on the young people it affects - get them (medical students) when they're young and on a very interpersonal level.

Last year a group of parents and young men affected by Duchenne muscular dystrophy, attended a luncheon sponsored by medical students, at Harvard Medical School - it went so well they invited families back again this year!!

We would like to invite you, New England families/friends, to the Harvard Medical Student DMD/BMD forum.

Date & Time: Thursday, February 4th from 3:30pm to 5:30pm
Location: Minot Room in the Countway library building - Longwood Medical Area at 10 Shattuck St. Boston, MA 02115.

Please see website for directions;
https://www.countway.harvard.edu/menuNavigation/aboutCountway/direc...

FYI - tea/cookies will be served.

Those of you who joined us last year, thank you and we hope you will join us again. The Harvard Medical Student program More to Life than Genes (MTLTG) has been changed in title to, Living with Chronic Conditions. Here, we are invited to share our DMD/BMD world!

Our families with B/DMD made such an impact last year, the Harvard medical students invited us back again this year! Exciting, as they typically do not invite the same groups back on consecutive years. The format will be a little different, so not a lunch but an afternoon of tea/cookies with big group session and small group sessions. We're hoping to get 10-12 families with B/DMD. Last year NPR came to cover the event and got some airwaves with WBUR.

Please RSVP to Laurie Bliss @ PedsNM@partners.org by Monday, Feb 1st.

For parking please contact Emily Asaro Morell @ Emily_Morell@hms.harvard.edu

Please pass the word around and help educate our future doctors on the many ways D/BMD affects our lives.


Hope to see you all there!

Christine McSherry

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Comment by Christine McSherry on February 5, 2010 at 8:27am
Harvard Medical Student Forum Update;


About six families affected by B/DMD attended yesterday's informal meeting with Harvard medical students; Living with Chronic Conditions. There was a broad age range of boys/young men represented, from 2 years old all the way to 46 years old!!

Discussion topics included;
- How diagnosis of a chronic, potentially life limiting disorder should be given

- The many actions that parents often take when faced with a devastating disorder, including non-traditional therapies

- How physicians should put into perspective the needs of parents - and how they often differ from the needs of the actual child/patient

- The urgency to craft medical students into a neuromuscular practice interest

- Emphasis on seeing those with chronic conditions as individuals and how clinicians often lump patients by diagnosis "the DMD boy v. the boy diagnosed with DMD"

- Assisting families and patients through the diagnosis, respecting the parents insight and knowledge

- Understanding that this disorder affects the entire family and their dynamics, for example - a DMD diagnosis affects where a family lives, financial responsibilities, vacations, education, health insurance, transportation, relationships, siblings, extended family, holidays, housing, sports/recreation - when DMD affects a family, it affects everything in that family

- Could programs that include the ENTIRE family serve a role? For example, a CAMP where families (including siblings) go for 4-5 days? Parents have support of other parents and perhaps some therapeutic assistance, siblings get to bond and hang out with other siblings who have a brother/sister that has a muscular dystrophy - there are several camps for families affected by cancer - great feedback and results

- Vocation ideas for affected young men

- Different ways that families tell their son(s) about their diagnosis, how doctors can help parents through this difficult time


Thank you for taking the time to educate and ignite these future doctors with some very important messages!

See you all again soon,

Christine

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