Inspiration from Support Group Leaders

PHA’s patient and caregiver support group leaders organize more than 200 groups, bringing together thousands of patients in all but one state in the United States.  We asked leaders to explain their motivation to lead a group. The responses are an inspiration to any patient, caregiver, healthcare professional or family member who feels the need to do something more.

Here’s what some of them had to say:

"I've learned a lot about who I am as I live with PH, and that I can still do what I love to do…be a leader, a teacher, and promote health and wellness. Thank you and Deb Martin for asking me to do this. I said ‘yes’, and got my life back. Bless you both."
- Charlotte McCabe, Puyallup, Wash., PHA Support Group Leader

"I am a support group leader because I want to connect everyone together. I don't like thinking about the fact that there are people out there with PH and they could be feeling lonely or like they are the only ones with this illness. I am a support group leader and put meetings together just as much for others as I do for myself. I too like to talk with others who have the same type of life and problems I do. I also want to help empower them with knowledge to make better choices about their treatments, life, etc... That's why I'm a support group leader."
- Heather Kirland, Treasure Valley, Idaho, PHA Support Group Leader

"I became a support group leader for several reasons:

  • It was a way to be connected with others who have the same type of issues with PH.  No one understands better than someone walking the same path.  This PH if you dwell on it too much is very scary.  Having had breast cancer a few years before PH-- was like a walk in the park compared to this.
  • I want to make sure the PH word is getting out in both the public and medical community.
  • I want a PH cure in my lifetime.
  • It is a way to give meaning to my life since I can no longer do the things I used to do. When my times come I hope that I have made a positive contribution to the world by being a support group leader and helping other with PH.
  • Lastly – The closest PH support group was more than an hour away.  I do not do well driving long distance. An hour is a long distance."

  • - Cindy Pickles, Piedmont Area, N.C., PHA Support Group Leader

"I am the Administrative Coordinator at Johns Hopkins and I run the support group for our patients. It’s not something that’s required of me, but it’s something that I LOVE to do. The simple truth is that I am the “behind the scenes” part of our PH department, so rarely do I meet our patients face-to-face. I guess you could say it’s for a selfish reason that I run the group…I want to put a face with the voice on the other end of the phone! I love helping our patients and I feel this is just one more little way that I can help!"
- Julia Miller RN, Baltimore Hopkins, Md., PHA Support Group Leader

 

Leader Profiles: Get to Know Our Leaders

Marla Akins, Temple Terrace, Fla.

Yunena Morales, Seattle, Wash.

Marcia Beverly, North Texas

Lindsay Collins, Rocky Mountain Wheezers, Denver, Colo.

Mineliz Colon, Puerto Rico

Alex Flipse, formerly Southeast Riverside, Calif.

Ellen Harris, formerly Northern Va.

Donna Head, Ala. & Jacksonville, Fla.

Perry Mamigonian, Fresno, Calif.

Merle Reeseman, Cleveland, Ohio; Mercer Co. & Pittsburgh, Pa.

Roxana Sulica, MD, N.Y., New York

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.