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.

GenHope Spotlight: Syrena Arevalo

By: Tadesse Wondwosen, PHA Intern
The younger generation of PH patients continue to overcome hurdles and make strides towards improving their lives with PH. Syrena Arevalo shares her story on embracing her PH and using what motives her as fuel.

PHA: Please state your name and where you’re from? 

Syrena Arevalo: "My name is Syrena Arevalo and I'm a proud Tucsonan! I graduated from the University of Arizona in 2013 with a double Bachelor's Degree in History and Mexican American Studies."

PHA: When were you diagnosed with PH?

Syrena: "I was diagnosed with Pulmonary Hypertension in August of 2012 after being rushed to the Emergency Room with Right Side Heart Failure. At the time, I was at the beginning of my senior year in college and had so many plans lined up for the year. But as we all know, we never know what obstacles will be placed in our path. This was a time in my life that I wanted to focus on my career and what I wanted to do with my life. I wasn't ready to focus on the unknown."

PHA: What are some of the challenges (if any) that you face when keeping up with your PH?

Syrena: "When I went back to school, many things changed. Not only did I have to try to focus on my studies I had to be aware of doctor’s appointments, medications, and how my breathing was doing while going from building to building. There were times when I felt like I really wanted to give up my dreams and my studies because it was just so overwhelming. I felt very depressed for a very long time. But there was a part of me that didn't allow myself to give up because I wasn't doing this just for myself but for everyone that was there during the most trying period of my young life."

PHA: I hear that you are an artist and in a music band? Please tell me more about that?

Syrena: "Art and Music has always been a part of my life. I’ve been a musician for about 15 years and play in a local Mariachi group. It has always been a great escape for me and allowed me to express myself while bringing joy to those watching and listening. I have met so many amazing people and have had to opportunity to perform in many great venues. My greatest accomplishment occurred after I was diagnosed. November of 2012, only three months after diagnoses, I entered a vocal competition in Las Cruces, New Mexico. I went toe to toe with so many great performers and singers in the region who attended the Mariachi conference that year. One of them would eventually become my boyfriend. I felt so much support at the competition that it was overwhelming. I had brought with me periwinkle ribbons and info cards with me and those who competed as well as the Mariachis who backed me up were more than willing to wear them. Even though it was a tiny gesture, it meant the world to me. In the end, I won the competition and received a scholarship that would pay for a portion of my last semester of college."

                                                                           

"After my diagnoses, I took a semester off of school to adjust to the side effects and site changes that Remodulin had on me. During this time, I submerged myself in painting. Before this, I would often doodle and take art classes in High school here and there, but nothing really serious. It allowed me to put down on canvas what I was feeling and what I wanted for my future. I became better and better at acrylic painting and recently, I was invited to show my work at a local art show. I'm hoping to do more shows in the future and keep doing it just for fun!"

PHA: Syrena what would you say keeps you motivated in not having your PH define you?

Syrena: "Life motivates me. Why should I let this disease define who I am? There are so many things that I still want to do. To travel, start a family, begin a career. During these last two years, I've had so many people tell me that they are praying for me and my family members, many people I didn't even know. My friends and family have been the greatest cheerleaders that I could have asked for. They have motivated me to keep up with my health even though it can be difficult sometimes. Not giving up is the least I can do for them."

PHA: Lastly, what would your advice be in how the younger generation can live with PH and still be able to live normal lives?

Syrena: "I would be lying if I told you that it's going to be easy because it's not. But we all have to remember that we have PH, but PH doesn't have us. We have such a great support group of amazing young men and women who know just what we are going through within Generation Hope as well as in other communities on the web or in your local communities. Seek them if you have questions or concerns. We are all in this fight together.  Lastly, continue to do what you love to do.  It can make the tough times a little easier."