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advocate of the month

Advocate of the Month August 2012
08.06.12

Advocate of the MonthCongrats to Sue Van Duyn, one of the Grand Rapids Michigan Support Group leaders, for being our August Advocate of the Month! Sue has done an amazing job bringing the importance of advocacy to her support group through the IMF Action Center and the Postcards for Parity Program. She was kind enough to provide us with some tips on how she and her co-leaders got her whole group involved in the effort.

Sue started out like many people out there, “I have to admit; I didn't pay much attention to advocacy issues until last summer when I heard Arin Assero and Meghan Buzby speak at the IMF Support Group Leaders Summit in Dallas. Their energy and explanation of the issues motivated me to become more informed and involved with advocacy issues that affect the myeloma community.” That was the start of her advocacy journey.

This spring the IMF dug into Michigan and launched a Michigan-specific postcard program with a goal to collect 500 cards in support of the oral chemotherapy access legislation. Currently, we’ve collected 115 cards from Sue’s group and there is still one more meeting for folks to bring her back completed cards. “Filling out a Postcard for Parity is such a simple way to make a difference in the lives of cancer patients,” Sue tells us. “This legislation affects all cancer patients, not just myeloma patients. Almost everyone's life has been touched in some way by cancer, so people are more than willing to help out.” At a group meeting in May, she “explained the oral drug parity act to our support group members and distributed the postcards. We had them sign the cards as well as take a few home with them to get signatures from their family and friends.” As well as everyone taking a few home with them, seven other members asked for stacks of 25 to get filled out. “Then we asked members to return completed cards to us at the next meeting so we can mail them to the IMF.”

Her group also hosted a great event where they asked people to fill out cards. “Laurie and Brad Duemler, our support group co-leaders, had a party recently celebrating 5 years of life since Brad's multiple myeloma diagnosis. They explained the oral drug parity act to their guests and asked them to sign the postcards - they got 42 signed postcards!”

The postcards for parity program is critical to our success in advocating for myeloma patients because there are key moments in our campaign where we will need to locate supporters from specific important districts in order to put pressure on key legislators. By having folks fill out postcards we are growing that group of people we can call on to help change a legislator’s mind in those final seconds of working towards passage. So a BIG thank you to Sue’s group!

Sue has also taught her group the importance of advocacy and gives these tips to other support group leaders:

  • The first thing is awareness, so make sure your group is informed of legislation and issues that affect them.  The Advocacy tab on the IMF’s website as well as the IMF Advocacy newsletter provides a wealth of information.
  • Your enthusiasm is contagious, so once you explain the issues to your group and why you are supporting them, your group members are more likely to get involved.  
  • As with any group, there is a wide range of personalities so get to know your members and what their strengths are.  
  • Make it easy for them to get involved.  
  • Distribute the postcards at a meeting and have members return them at the next meeting, then mail them to the IMF so members do not have to deal with that.  
  • Send a link to the IMF Advocacy Action Center so it's simple for them to e-mail their legislator to support specific legislation.        

She also uses the Action Center to promote her meetings through our Media Guide: “When we first started our support group in June, 2011, Robin Tuohy guided me through the process of sending a note to the local media using the Advocacy Action Center. Based on your zip code, it finds the local newspapers in your area and you can send a note to up to five newspapers at a time. We used this to send out announcements about our group when it was initially formed, and we continue to use it whenever we have a speaker. There are always people who come to our meeting when we have a speaker who heard about it through the newspaper announcement.”

We at the IMF are truly in awe of all our advocates and can’t thank Sue enough for her dedication to myeloma patients. But I think Sue sums it all up the best. “We truly believe that everything happens for a reason and although we certainly didn't welcome the MM diagnosis, many blessings have come from it including the opportunity to lead our local support group. The IMF and especially Robin Tuohy were a tremendous help as we launched our group. And now as we have migrated into advocacy, Aimee Martin has been a big inspiration as she has shown us how to get involved. We've been amazed at where this myeloma journey has taken us, the incredible experiences we've had and the wonderful people we've met along the way. One of our members summed up the purpose of our support group best: it's a place to "encourage and to be encouraged."  


 If you are not yet an IMF advocate, please sign up here

The Postcards for Parity Program is not just for Michigan folks. We are on a roll with over 1000 postcards collected nationwide for HR 2476, the Cancer Coverage Parity Act. Email Aimee to learn more and join the team!

If you live in Michigan and haven’t sent an email to your state representative regarding SB 540/541, take action today.


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