2011 Award Winner Profile

Colleen Brunetti

by Colleen Brunetti
PH Patient

An Awareness Idea Becomes Reality through a Lantos Award

L to R: PSA video participants Melanie Kozak, Carol Morrison, Misty Lewis and Colleen BrunettiL to R: PSA video participants Melanie Kozak, Carol Morrison, Misty Lewis
and Colleen Brunetti

Like all of us touched by this disease, my greatest wish is for a cure. But as time has gone on, I have also realized that if I am going to have the right to hope for a cure, then I have to take some active part in pursuing it as well. I'm no doctor; ideas for research and better treatments aren't going to come from me. But I am by nature very much a "people person." And as a stay-at-home mom who is self-employed, I'm also a social networking addict.

Last year, the call for applicants went out for the Tom Lantos Innovation in Community Service Awards. I thought, "Oh, that's nice." And really, I had no intention of applying. Already involved in several PHA outlets, I didn't have time for another project!

But then I started thinking about how the email group part of Generation Hope, PHA's community for patients in their late teens, 20s and 30s, was such a lifeline for me, and I knew PHA had these groups for people in other demographics too. I also thought about how allied health professionals see patients every day, and they are the ones who are going to ask a patient, "How are you coping with all this?" They need to know about the powerful tools they can offer patients through PHA. I could help get that word out.

So, less than 48 hours before the deadline, I applied for an award. And, much to my surprise, I got it.

I was able to locate Design Is Love, an organization that seeks to link up creative types with non-profit organizations. As luck would have it, I started contacting artists on this website and landed on the founders themselves. Co:Lab in Hartford, Conn., worked with me to bring what was initially a very simple vision right through to a reality.

In addition to the design team, patients Melanie Kozak, Raye Bohn and Carol Morrison and caregiver Misty Lewis agreed to participate in the video. My friend Adam Blau, a composer in Hollywood, donated his talents for music, and PH Dad and PHA Board member Steve Van Wormer provided the professional voiceover.

The end result was so much more than I originally dreamed up, a result of a group of dedicated individuals all coming together. Sure, it was my idea, but that idea was further shaped by the Lantos awards committee and the project participants, and it really came to life through the many talents of everyone involved.

The video has now gone out to thousands of people across the country via DVD and digital distribution. My sincere hope is people will view it and when sitting across from a patient who is overwhelmed with PH or, like me, wanting to reach out and make a difference, they can then say, "Hey, I know of these great groups you can join where you can find other patients just like you." And, because the PH community always comes full circle, people will continue to find the support they need and offer support in return.

We make a difference when united together. Someday I believe that collective effort is what will ultimately drive us to the cure.

 

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.

For the best viewing experience of this site, it is recommended that you use Internet Explorer 8 or 9 or Firefox.

© 2014 Pulmonary Hypertension Association. All Rights Reserved.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.®

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.