Massachusetts Height/Weight Bill has been withdrawn by Representative Byron Rushing. The bill may be re-introduced in the future. Please contact the Massachusetts State Senators and Representatives and express your continued support for this law.
The Fall meeting is scheduled for Saturday October 11, 2008. One of the hot items up for discussion is the upcoming elections in 2009 for the Board of Directors. If you are a NOSSA member, interested in volunteering as a Board member, contact NOSSA today and express your interest.
NOSSA Voting Members interested in running for a position on the NOSSA Board of Directors may now send in their application for candidacy. For more information, NOSSA members may visit http://nossaonline.org/memberlogin/memberlogin.html
Its that time of year again and Steve and Mary are participating in the walkathon for the Autoimmune Information Network (AIN). As we have done in the past, Steve will be pushing Mary in her wheelchair. This year the event is on Sat. Sept. 13.
As you may know Mary has six autoimmune conditions. The first diagnosis was at age 4 ½. Her diagnoses spanned over 30 years and the last occurred just five months before our wedding. When we learned of this organization several years ago, we joined. Although we belong to several organizations which focus on a single type of condition which Mary has, AIN provides a refreshing perspective because it looks at autoimmune conditions from a broader view. If AIN had been around earlier, it's likely that Mary wouldn't have waited so long to be diagnosed with most of her conditions.
Last year on the walk, the organization put up signs with facts about autoimmune conditions along the way. We were shocked to learn that it takes an average of three years and 8 to 10 physicians to obtain the correct diagnosis. Mary’s experience has shown us how true this is. Her longest diagnosis took ten years. Years ago we lost count of the number of physicians involved.
Founded in 2003, AIN is run by a person with multiple autoimmune conditions and other volunteers. All its members and volunteers have autoimmune conditions or their family members do. There is no paid staff. The mission of AIN is to help patients and their families cope with the disabling effects of the 150+ known autoimmune diseases through education, public awareness and linking people with available programs and support groups. AIN has helped to obtain donated services for hundreds of autoimmune patients. These services would have cost over $1,849,600.
AIN helps direct patients and families to find medication assistance programs, with paperwork and applications, and even monetary resources if the need arises. It also helps people with autoimmune diseases find doctors that specialize in these diseases and obtain transportation to get to them. When needed, AIN serves as patient advocates. For more information, check out
We are grateful for anything you can do. As we say at AIN, no donation is too small. Also if you know of anyone who may be helped by this organization, please give them the contact information.
Love,
Mary & Steve
PS – We’re also putting together a team to walk and/or fundraise. If you’re interested in this, please let us know.
The Annual Board of Directors Meeting is coming soon. If you are a member of NOSSA and wish to attend or if you wish to communicate your thoughts and ideas to the Board, please contact us now so we can be sure to add your name to the agenda.
