04 April 2011
This past weekend, my husband and I attended a ‘round-table’ discussion with the National MS Society… to have an open dialogue with the MS Society regarding what the MS Community felt was needed – and ideas on what could be done to help the community as a whole. What a good time we had!
Before we delved into the discussion, our facilitator shared a few things with the group.
the chicken is involved – but the pig was committed – giving its all for that meal. Involvement is great – but commitment is essential.
With that – we launched into a few smaller groups to discuss what we felt was our top priorities as the MS Community… here was our list:
1 – a CURE and remyelination! Let’s find a cure for this crappy disease & put the NMSS out of business!
2 – More Transparent Therapy Information… whether it is on alternative therapies, nutritional, exercise, holistic, sharps disposal, etc.
3 – More FAMILY recognition. Get events & support groups that can include the entire family. (In our area, none of the support groups allow children… not everyone can afford a sitter all the time – and who says this disease doesn’t impact the child(ren) of the MS patient? Furthermore, there is not a lot of ‘caregiver’ support – emotional support or otherwise.
4 – AWARENESS & VISIBILITY. Huge. One idea from our group was to talk the SF Giants into sponsoring/adopting the MS Society… their colors are already Orange & Black… a Perfect Fit! J
I’m likely forgetting something – but there you have it. What we want… What we’re willing to be involved in… Now – the question is – what are we willing to be committed to? And how will we achieve these wants?
Well – I’ll tell you – I’m working on and committed to #3. My husband and I will be working with the NMSS office here in Sacramento to begin a new “support group” that is family friendly. It may be just one group in the Sacramento/Natomas area – or a second group that would meet in the Roseville area too. You’ll know when things get moving in that direction!