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.

I Am Not My Disease!

By Kiara Tatum

Kiara and niece being silly

I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 

I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?

Here Comes the Sun

By Marissa Barnes

As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to

“Always bring your own sunshine.”

 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).

Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!

Kristine and family at Detroit Zoo

Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.

We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day