Confessions of a Once Reluctant Fundraiser

Reprint from PathLight Winter 2015

Colleen with a friend at her
"Shake It For PH" Zumbathon

There was a time when I didn’t like fundraising. Don’t get me wrong, I’d gladly throw some money behind a cause or person I supported, but actually doing fundraising for pulmonary hypertension, as in, create an event, solicit friends and family, and pull it all off?

No thanks.

My reasons were pretty clear at the time. I felt that if I were to fundraise for the cause, I was somehow fundraising for myself. And I wasn’t comfortable with that at all. To do so would mean both admitting how sick I was and asking for help, and I didn’t like the thought of either. These feelings guided me for a while. However, as I got more involved in the cause, the more I came to realize just how crucial the funding part was. My stance has long been this: “If I have the right to hope fora cure, I have to take an active part in doing things that get us there.”

Well, what gets us to a cure is research dollars (and advocacy!). But someone has to provide those dollars, and I began to see that the push for that had to be led by someone like me — the one whose hopes rested on the cure those funds could bring. Maybe that’s you, too.

So, I tentatively dipped my toe into fundraising.  I’m a part of PHA’s Generation Hope, PHA’s group for patients in their late teens, 20s and 30s, and a few of us banded together to help raise unity funds for the “Path to a Cure” climb, where two doctors and a physician assistant were climbing Mt. Kilimanjaro to raise money and awareness for PH.

That went pretty well! So then I started thinking about an event. I decided I needed to have a shift in perspective. Instead of thinking about asking for money, I decided to invite people to a party. A good party is something I can handle! So, I created the first-ever Zumbathon for the cause, dubbing it, “Shake It for PH.” That was so much fun I did it again a second year.

In 2013 a new opportunity arose. Team PHenomenal Hope was preparing for Race Across America and two patients, Diane Ramirez and Janet Mabe, committed to walking a combined 100 miles to raise awareness and unity funds for the event, a goal which they actually far surpassed! Their actions inspired me to do my own athletic event. A friend and I participated in a Warrior Dash and raised sponsorships through that.

All in all, I’ve raised almost $14,000 for PHA. Every event was fun, and I’d do them all again. Not so bad for someone who once publicly declared that fundraising was not for her!

Now I have my sights set on something bigger. This year, PHA launched the PH Care Centers, an initiative to establish a program for accreditation of centers with special expertise in PH, and to raise the overall quality of care and outcomes in patients. With this initiative comes the goal of a patient registry. I believe that achieving this goal could revolutionize how medical providers and researchers approach PH, but I also know it will take a very strong financial platform to make it happen.

On May 1, 2015, Hartford, Conn., is going to host a fundraiser for the registry unlike any you’ve seen before. We are going to throw one big party (you see my theme here), and take 254 people to see Jay Leno live. I’m working with an amazing team, and I do believe we can pull off something great. Stay tuned! And be it big or small, be thinking about how you, too, can get in on the cause — a cure for pulmonary hypertension. As I’ve learned from starting small and slowly growing my fundraising efforts, every little bit truly does help.

By Colleen Brunetti, PH patient; Member, PHA Board of Trustees; Generation Hope Advisory Board Member

If you would like to join Colleen and jump into the world of special event fundraising, contact PHA’s special events team at Events@PHAssociation.org or 301-565-3004 x742.

Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 1

It started out slowly, getting out of breath going upstairs or running laps in gym class. They said I had asthma. A year later, I began passing out. They said I had epilepsy even though my "unexplainable losses of consciousness" didn't fit the definition of a seizure. Eventually, I was gasping for air walking from one room to the other. After three years, I was finally correctly diagnosed with PH. I was 19 at the time and was "knocking on death's door."

That was seven years ago. I went from "don't get your hopes up" to embracing my "new normal." Three years later, the disease progressed. In just five months' time, "stable" was replaced with "heart failure" and "borderline kidney failure." Then, after transplant evaluations, I improved to "better than ever." Of the 12 drugs currently on the market, I've been on seven.

On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. I decided to revisit the college campus where I was "knocking on death's door." I wanted to retrace my steps – and the many stopping points along the way – from the psychology building up to my dorm. Everyone else's five-minute walk became my 45+ minute ordeal. I also planned to walk from my dorm to the art building where I passed out for the eighth time. This was finally the turning point that brought us to the PH diagnosis. Now that I am "better than ever before," I wanted it to sink in just how far I have come. I was also hoping to quiet the lingering fear that this stable and, dare I say it, good "breath of fresh air" is all just a temporary, albeit wonderful, dream. It worked.

What follows is part one of the journal entry I wrote as I walked that day:

9/6/13

Long-term survivor TODAY. Weather is perfect.

In the bottom floor lounge of the psychology building writing this. The elevator was my first rest stop. Most days I was able to at least make it that far, still feeling okay. Well, here we go …

My second stop: right outside the front doors. I'm actually SHOCKED right now how short that distance felt. My next stop, a tree in the parking lot across the street, doesn't seem far at all.

I remember leaning on this tree GASPING for air. If I thought about it, I had my phone out ahead of time so that every time I had to stop, I could pretend to be texting. This tree isn't even half way yet, and many times I would be ready to cry already. I did notice a gradual incline as I crossed the street this time.

Crossing the parking lot, which is slightly uphill, was definitely my farthest distance between stopping. It took me under two minutes to reach the big rock across the lot. Felt my heart working a little faster, but I was only S.O.B. for a few seconds. This is the halfway mark. Again, I would be GASPING for air at this point. Still being told I had only "minor" health issues. Looking at these distances now, seven years later, its like, "WOW." They seem so short. It’s hard to believe. This reaction is exactly what I was hoping for. Next, I go around the cafeteria to a picnic table alongside the building. From this point on, it’s all steeply uphill …

The picnic table was gone. I just kept walking. Definitely more of a workout this time. The hill got really steep. Some steps, too. Sitting in front of the dorm now, just long enough to write these few lines, and my heart rate and breathing are already coming back to normal. By this point, I would have been BEYOND EXHAUSTED. My roommate, Kelly, said I was "the soundest sleeper she ever knew." I never realized how completely exhausted I always was by the time I got back to the dorm room.

I can't tell you how many times I felt myself starting to pass out on the way to the English building (uphill from the dorm, a lot of steps into the building). I would tell myself, "Just make it inside. Don't pass out now on the street. More people will see you in the building." We still had no idea why I was "inexplicably losing consciousness." That class is all a blur. I was too worried about staying conscious to care about Shakespeare.

So much is going through my mind. Above all else is the realization that my main thought right now is not: "OH MY GOD, I CAN'T BREATHE!" Or how badly my chest burned with every inhale, like my insides were being torn apart. Or how dizzy I was. Every step, every breath felt like it would be my last.


Check out tomorrow’s blog post to see how my journal entry concludes.