June 12, 2007 GLHF ADVOCACY COMMITTEE MEETING MINUTES

Conference Call

Members in Attendance:  Barb Dittrich, Darcy Zweir, Jozef Zwier, Sam Zwier, Ron Strauss, Gina Siolka, Stacy Brault, Matt Brault, Fred Tamms

Members Absent:  Shelly Mattson, Celine Caithamer, Steve McMurtry, John Martin

Staff in Attendance:  Kathleen Roach, David Linney

The meeting was called to order at 5:30 p.m.

1. Advocacy Training Summary: Committee members reviewed the evaluation summary.  David Linney mentioned that it was great to have so many people come together to focus on the issue of advocacy.  Ms. Roach state the suggestions provided will assist in future meeting planning.

2. Legislative Day at the Capitol: Committee members agreed a legislative day at the capitol would be a good next step.  There was agreement that organizing it for the fall makes sense.  People believe that if they have enough notice of the date, they could take time off of work. Committee members also requested a training before the legislative day.  Could be a week earlier or a few hours prior to the actually day at the Capitol.    It was suggested that the training does not have to be lengthy but rather include the key points that should be discussed with legislators and telling individual stories.  It is also important to coordinate appointments and teams.  Ms. Dittrich offered to check with another nonprofit group she works with on the process they use for their Madison legislative day.  Ms. Roach will contact Andy Franken from Hamilton Consulting and Valery Gallagher from Baxter to discuss organizing the process.

3. Letter writing campaign: One suggestion on continuing to have individuals stay involved was to have a letter writing campaign.  One idea was to send a letter to legislators a week or so before the legislative day at the capitol to inform them we would be visiting soon and to give a heads up on our issues.  Ms. Dittrich offered to draft a letter.  Ms. Brault mentioned that people like to participate in advocacy at different levels.  Ms. Roach suggested the committee come up with a list of ways people can advocacy and then ask individuals with the bleeding disorder community which opportunities they would become involved in.

4. Ongoing lobbying in Madison:  Mr. Linney and Ms. Roach will continue to work with Hamilton consulting on setting up opportunities to meet one on one with legislators.

5. HIRSP Committee: Mr. Linney announced that the HIRSP committee in Madison to look for a community member to serve on its committee.  Those interested should contact Mr. Linney.  One community member has said he is interested in serving on the committee.

6. GLHF exploring expanding their mission:  Ms. Roach asked the group for input on the idea of expanding the mission statement to include thrombosis and thrombophilia.  Comments included needing additional information on how many people this affects and how the programs and services would differ from the bleeding disorder community.  Another comment was that possibly by expanding the number of people served more resources would become available and advocacy could become stronger.

7. Youth Leadership Group: One outcome from the advocacy training was the idea of creating a youth leadership group.  This group could sent several goals with advocacy being one component.  Ms. Roach has discussed the idea with Shelly Mattson and Rich Pezzillo both members of the NHF Youth Leadership program.  They are willing to assist with a training and organizing this group.  Sam and Jozef Zwier who were on the conference call thought this was a good idea.

8. Employee Right’s seminar:  One of the GLHF’s Board members who is a lawyer for Marcus Foundation suggested offering an employee right’s seminar to the bleeding disorder community.  Committee members were in favor of the seminar.  GHLF will organize this and look into offering the program around the state, possibly through video conference.

9. Meeting Dates:  Ms. Roach suggested that the committee schedule six meetings for the next year.  Initially we may have more meetings because we’re getting better organized.  The next meeting will be Thursday, July 12 at 5:30 p.m.  by conference call.

10. Other: Mr. Linney gave an update on the Wisconsin Chronic Disease program indicating there will most likely be a cut in the funding.  This should not be a problem right now because all the dollars are not spent.  There is still concern for the bleeding disorder community if even one individual needs $250,000 coverage or more.  (David—please edit this section).

11. TO DO LIST:

• Green Bay folks have meeting set for June 13 to discuss advocacy (Stacey, Matt, Gina).
• David will follow up with the HIRSP committee and will attend the next Chronic Disease program meeting June 20, 2007.
• Barb will draft a letter that could be sent to legislators prior to our legislative day in Madison (Look at notes and talking points from NHF)
• Kathleen will contact Andy Franken and Valery Gallagher about a legislative day in Madison.
• GLHF will begin building a framework for the Youth Leadership Program
• Kathleen will organize the Employee right’s seminar hopefully for late August.