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Meeting Minutes from March 16, 2014

Location: Cambridge, MA

Date: Sunday, March 16, 2014 2:00 – 4:30 p.m.

Attendees: Melissa Welin, Eric Welin, Aimee Freedman, Emily Hanke, Christy Avlasov, Kate Leonard

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  1. Introductions
  2. Announcements
    1. New co-leader is Aimee Freedman
    2. New Regional Leader is Paula Fasciano (all northeast groups report to her).
    3. Name changed from LINKS Group to CSN, explanation of new branding is no one could really explain LINKS quickly enough and CSN (Community Support Network) makes more sense for what we truly want to do, which is provide support to families affected by Fragile X.
  3. New Business
    1. Discussed the desire to have more family support from our group for the people in Maine, Vermont and New Hampshire. We will be looking for ideas on how to get them involved with the Eastern Ma group since it is the closest geographically and there are not enough families to make a group.
    2. Future of the group
      1. Locating & supporting families
        How do we find newly diagnosed families to provide support to them?
        Typically Eric and Melissa take the newly diagnosed parents out to dinner to just touch base and answer any questions they may have. At this time, Eric and Melissa are finishing up a training program at Children’s Hospital that would allow them to be at the appointments of newly diagnosed parents, if they should chose that, and offer them support right from the get go.

        1. Possibilities include, but not limited to:
          1. Putting together a folder for the new families with info on resources, contact sheet, etc.
          2. Current volunteers to be available for FX appointments (maybe others in group would like to help with this??)
      2. Promoting Awareness
        1. Possibilities include, but not limited to:
          1. Conference geared towards professionals (i.e., educators) not families. Have a family panel that could discuss bedside manner, treatment during appointments (positive and negative), etc.
          2. Wright’s Law conference, Peter Wright. Basically all you need to know about the IEP and all laws concerning the special education of your child/children.
        2. July 22 is National Fragile X Awareness Day nationally and in Massachusetts. The group in attendance decided that we should do the Virtual 5k run/walk. We will be doing it on Sunday July 27 as a group. Any money raised by our group gets divided between the NFXF and Eastern Ma group (50/50). This is an amazing way to raise awareness and funds for our group, plus would be lots of fun to do together. Suggestions for locations are using a school with a track that has indoor access in the Needham, Wellesley or Natick area. Christy has offered to find us a location. If anyone has a connection to any place that we could use, contact Christy.
      3. Fundraising
        1. Contacting retailers (GAP, Whole Foods, Trader Joes, etc.), local businesses and restaurants to see if we can get them to do a day where they would donate a percentage of their daily revenue to FX. Solicit ideas from group.
      4. Advocacy efforts
        1. Advocacy Day turnout for Massachusetts this year wasn’t that great. We only had 2 Rep meetings out of a possible 9 because we didn’t have registered voters attending from 7 of the districts. We really want to push next year to have an outstanding Advocacy Day effort from our group.
          1. Informational meeting in January regarding what to expect and what you need to know before you sign up to eliminate some of the intimidation people feel. Our goal is to have every district in the state represented.
          2. Post-Advocacy day letter writing (2014). Even though the turn out wasn’t great, we can still write letters to Reps and Senators. Melissa will send out more info regarding that and possibly a template so people have something to reference. The letters need to have personal story (How has FX affected your life?) and a summary of what is being asked for. The deadline for the letters will be April 4, 2014. More info to follow from Melissa.
          3. Post-Advocacy day letter writing (2015). We also tossed around the idea of a large scale letter writing effort for next year. Anyone can write letters!! Parents, grandparents, sibs, cousins, babysitter, teachers, aunts/uncles, etc. they just need to have a connection to FX, i.e. your family. More info will come as the time to do it gets closer, but you will be given ample time to organize yourself for it.
      5. 2014 Educational Event.
        1. Financial planning for the future ( all encompassing). They will have the ability to offer people referrals to attorneys that do special needs trusts. Melissa is going to find a location for it. Location suggestions were for the Framingham area, potentially a restaurant’s private room, and find out the exact date from the presenters (Eric will call).
      6. International Fragile X Conference.
        1. Group auction donations. Needs to be something that is appropriate for all, not region specific (not a mom and pop business gift card only good at their Ma location).
      7. 2014 Social Event
        1. Family fun day and fundraiser in the fall at an indoor play space in Woburn.
        2. Jump-In in Woburn (different place from above). They have private rooms that you can rent and it is believed that you can rent their entire facility for your event for a certain amount of time.
  4. Quarterly newsletter.
  5. Quarterly business meetings.
    1. Next meeting will be June 21, Cambridge, MA 02138, 3:00 p.m.

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