Multiple Myeloma Support Group
SATURDAY JANUARY 14, 2006 MEETING
1st Anniversary of the Multiple Myeloma Hamilton & District MM Support Group
Lori welcomed and thanked all who came to attend.Specific thanks went out to Linden Park United Church for the room use; Sue Robson for her ideas and input; C.A.P. on Concession for supplies; Wellwood Resource Centre of Hamilton for speaking in the beginning; and all those who generously made donations.
The MM Support Group is continuing with the selling of IMF bracelets for Myeloma and the collection of old cell phones. The donated phones bring in between $1.00 and $7.00 per old, non-working phone.
i) Guest Speaker:Ryan Clark
Lori introduced the guest speaker, Ryan Clark, who spoke on the Advocacy for Velcade. Advocacy efforts have been ongoing for 6 months trying to secure access to Velcade and get the policy issue amended to a broader range of drugs. Ryan works with non-profit groups and charities who have issues with the government and donít know where to start. He helps to direct and guide such groups.
Advocacy is verbal support or argument for a cause. It is telling your story to Government Officials in an attempt to get results. This usually takes time which can be frustrating and challenging when in the case of MM, time is so precious. Advocacy groups are important because Authority Figures react to those who can make them listen and they respond to those who ask for help. The Provincial Government has competing interests. Many different voices are seeking out many, many different things. If you donít engage the result is NOTHING. If you do engage the result is POSSIBLE SUCCESS. It is important that even when one is sick, they try to do some small thing for their cause. We are all voters who have the right to engage in an effort to have Velcade covered. The System should not be able to say NO.
Queens Park: There was much activity between October 17, 2005 and December 15, 2005 to push the issue for access to Cancer drugs. There are 24 petitions present and 8 of them are by Liberal members. In December, the Ontario Legislation sat for only nine days, in those nine days 11 petitions were presented. No one issue got more attention! A lot of awareness was raised! We have joined forces with the Cancer Advocacy Coalition of Canada. There were print outs on the tables giving step by step instructions on how to bring attention to your cause. Ryan referred to some written information on each table; media coverage, approaching MPPís, new Advocacy E tool (Advocacy on line).Ryan concluded by affirming that we will be successful. The harder we work, the quicker we will see results. He then fielded some questions.
Laura updated us on the Princess Margaret walk-a-thon she and her family participated in last fall. The final numbers were $226,000.00 for PMH Cancer research with $126,000.00 of that going directly to Myeloma. The Myeloma team started with one person raising $5,700.00 and has grown to having 113 participants in the last walk-a-thon.
iii) Round Table Discussions:
Laura thanked Ryan and started the Round Table Discussions in motion. There were individual stations for Remission, Velcade, Thalidomide, Care Givers, Pain Management, and Stem Cell Transplant. Each table had suggested Guidelines on how to best utilize discussion time which was limited to 60 minutes.
iv) End of Meeting:
The meeting concluded with everyone enjoying some cake in Celebration of our 1 year Anniversary.
The next meeting will take place on Saturday, March 11, 2006 at 1:00 p.m. at the Linden Park community Church.