11-21-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – November 21st, 2012         

 

Members Present: Lauren, Elyse, Ed, Jay, Ann, Bryan, Jackie

 

Members Absent: Laura, Colleen, Richard

 

Guests Present:  Rosie

 

1. October minutes approved.
2. The council discussed research completed thus far for the members individual areas.  Those members that were researching transportation (Laura, Bryan) included Lions/Kiwanis clubs, Angel Flight, Ride-Share programs, public transportation and the National Patient Transportation Center.  Some of the members split the category up into those needing "medical" assistance for transportation, and those who need a means of transportation.
3. Ann and Elyse, who were researching fundraising opportunities, presented a letter writing campaign.  Discussed were the letter itself and the logistics necessary to create a fund, who to send donations to, methods to send donations, etc.  This information is to be clarified with Eric and Colleen.  The goal is to raise $5,000 and the fund is to support transportation for clinic appointments including necessary additions such as lodging that may be required for long-distance travel. 
4. Jackie researched work-related difficulties.  Most of the resources available are for those who need to take extended absences, over a week or more, but there is a section of the FMLA law that allows for intermittent absences for the management of chronic medical conditions.  Given the guidelines, it appears as though CF would qualify.  While FMLA does not provide financial compensation, it does provide job protection.  There is also a resource book found on the cff.org website geared towards clinicians to help patients with legal rights issues.
5. The training session for Peer2Peer Program was launched.  There were 3 mentors from the CF group and 5 mentors from the Heart Transplant group.  Some people did attend via WebEx.
6. Next Meeting set for Wednesday, December 19^th from 5pm to 7pm.

 

Action Items

 

1. All: If you have not already, please email you're the information you have found in your research regarding your specific area to Laura, as she will compile the information into one document.