Nicole Hogan-Williams is one of several advocates who got a head start on the Pulmonary Hypertension Association’s (PHA’s) Advocacy August campaign by visiting with her elected officials in July. This was Nicole’s first time speaking with congressional offices about the impact of pulmonary hypertension (PH) on her life. She was nervous at first, but her personal story made a huge impact on congressional staff.
She visited with staff from the offices of Rep. Susie Lee (D-NV) and Senator Jacky Rosen (D-NV), and then shared her experience with PHA.
“Gabby Everett was very easy to talk to and made me feel comfortable — like I was meeting up with an old friend. She took a lot of notes and seemed very interested in what I had to say. I was just really honest and expressed my gratitude, and I started talking to her like a friend. I told her how devastated I was at first and how PH affected my life. I have a feeling I made a difference for Nevada and also for our local support group.
“April Lalone from Senator Rosen’s office had not heard of pulmonary hypertension and was totally unaware of the diagnosis, symptoms and life expectancy of this disease we live with every day. I invited Sharyn, the local PHA Support Group Leader, to join me and she was a big help in explaining what PH is and how we deal with it. Mrs. Lalone even said she would like to attend one of Sharyn’s upcoming Pulmonary Hypertension meetings as a guest speaker. I am just so proud of myself for speaking up and being heard on behalf of pulmonary hypertension community. I presented my facts on a global scale, a local scale and a personal scale. Just to sit there was such an honor and for the regional representative to actually listen to me and show that she genuinely cared about my disease and what I go through on a daily basis left me feeling like I actually do matter in this world.
“I thought it would be hard, and I was a bit nervous, but once I got there and started talking to them, I realized something I was not prepared for…they actually do care about me and people who have this disease. They want to help and that in itself made me feel so good.”
PHA offers coaching opportunities for those new to advocacy work. To learn how to educate members of Congress about the impact of PH on your life, contact Katie at Advocacy@PHAssociation.org or 301-565-3004 x749.
