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.

Generation Hope #StillPHighting

by Generation Hope Advisory Board

November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to AngeliaD@phassociation.org, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:




For more details and a guided script for your selfie-video visit PHAssociation.org/stillphighting

The Long Road to Her

By Colleen Brunetti

This blog is probably one of the most raw things I have written to date. It contains thoughts and experiences I had previously chosen to keep private (in fact much of it was written a year ago and never published) - odd for someone like me who has otherwise made a decision to live this diagnosis out loud in an attempt to change its course. But now is the time to share. My prayer for you if you are living some of these same struggles is that you find some hope in our story.
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My journey to her began at age 19. It was the year I took the job as a nanny for a little girl newly adopted from China. I clearly remember rocking her to sleep in my arms, gazing down at that gorgeous perfect little face, and having the wind sucked out of me. What if her parents had not cared enough to go and get her? What if she had stayed in a Chinese orphanage? What hell of a life would she have lived? And here she was, safe in their home, safe in my arms, the world at her feet. I vowed then that I too would make the difference in a little life, and adopt.

I knew the child I got would be a girl... Altruistically speaking, girls have a pretty tough time in much of the world and I wanted to make a difference for one. Totally selfishly, I wanted to raise a ballet dancer, like me, someone to share that with (for as long as she would tolerate it before asserting independence, of course!)

Eight years ago I had another brush with adoption that only further solidified these feelings. I was teaching special education and I had twin girls from India on my case load. They were the result of a botched late-term abortion and had survived, eventually being adopted by an American couple. Again, I found myself looking at them and thinking, "What if..."

Fast forward many years, and I have an incredible biological son. A son who is my own miracle - as we now know I shouldn't have survived the pregnancy because I probably had PH already, and we just didn't know it.

When you have PH you can't get pregnant. Or, at least, you really really shouldn't. This is something you're told pretty much upon diagnosis. When I was told, it didn't faze me. My son was an infant at the time, and pregnancy was not something I was too big of a fan of the first time around. Since I already knew I wanted to adopt, I figured that would be our route, and that was totally cool.

Except, for a long time it wasn't our route at all. I was so busy chasing a toddler and trying to get better and trying to be self-employed, and my husband always works so hard, and our lives were just full. Although we batted the idea of adoption around many times, the answer always seemed to be "Not now." And that was fine.

But then a little over a year ago my damn biological clock started ticking...and chiming... and the gong started going off... and I couldn't make it stop. I wanted that baby.

After long heart-to-hearts with my husband, it was clear he just wasn't ready for adoption. And I couldn't blame him. It's not like other times when we've disagreed and my nose is all out of joint because he doesn't see it my way (come on, you know you all get like that). This time, he had real fears about the future. How the financial burden of supporting our family is by and large on him.  And worse, he had fears about being a single parent some day, if PH took the ultimate toll. These aren't fears we face head on too often. In fact, we never had before. We've chosen to live with the positive and not think that way. But when we're choosing to discuss a very purposeful choice for the long-term future, and involve the life of a child, we kind of have to wrestle with that dark side too.

For the sake of my marriage, I vowed to force this clock away. MAKE it go away. Focus on my son - whom I love and adore and is so so so enough in all possible ways. Basically, I tried to beat my biology. And pretend I was winning. And I did okay... for a while.

Then in the spring of 2013 I attended a dance recital. And I sat there and looked at the moms around me smiling with so much pride for their daughters on stage and I just lost it. I sat in the dark auditorium and cried silently. That should have been me. PH robbed that from me.

The grief followed me in the months ahead, although I tried to keep it in. Baby showers were torture. My sister got pregnant and I cried my way through shopping for the niece whose arrival I was over the moon excited for. And finally it was clear that I was going to have to either get some serious professional help in letting this all go, or re-visit the decision.

I tentatively broached the topic with my husband. And... he said yes. Why the timing is right now, I just don't know (neither does he). But my health is stable (thriving, even), all of my doctors are 100% in support of this decision, my business is growing, things have changed... and now we're ready as a couple and as a family.

Then it was just down to deciding on how to get her. International adoption held little draw now. I wasn't that interested in having to travel overseas with PH to go and collect her. Domestic adoption sure sounded good, but the tens of thousands of dollars it costs seriously deterred us. Surrogacy was also on the table... but I ended up deciding that if we really were going to do this, I needed to stay true to my original intent all those years ago and help a child in need.

And so, we were left with the foster system. We have chosen to adopt through social services and take a child whose parents can not care for her. It does not escape me that for us to get our daughter, someone else will loose theirs.

This path is scary. In fact, I should probably be much more jittery about it than I am. The child may come to us drug exposed, abused, neglected... who knows. We could be placed with a child, only to have the arrangement fall through because the system deems reunification with the birth family or extended family is better. But the truth is, the road to her has been so very long, sometimes so very hard, and now is the time.

It is going to be fine.

I have total peace about it. A peace that surpasses understanding, and I'm pretty content with that.

We're almost done with all of our DCF licensure requirements.

Now, all we have to do is wait for her.

The Long Road to Her was originally posted on Colleen's blog on July 2.  Follow Colleen's blog, PH and "The New Normal"

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

PH, Professionalism, and the Digital Age

Leading a professional development presentation.

Photo Credit: Amharc Photography

The Back Story

When I was first diagnosed with Pulmonary Hypertension I was teaching part-time in a public school. I was met with a lot of sympathy, and promises of support from the school community. Within months, however, my teaching assignment for the following year was changed to a situation where my hours were cut, my commute extended, and a student was placed on my case load who required both physical restraints for violence and chasing because he tended to bolt. By the time I was diagnosed I wasn’t even climbing a set of stairs well, so this was of course out of the question. When I tried to have my assignment adjusted so that I was actually teaching and not chasing, I was shown the door… or I quit… or I was kind of fired… whatever you call it, I was out of a job and the correlation between my diagnosis and the change in job assignment was just too convenient to ignore.

Could I have sued? Yes, probably. But I was immersed in this totally terrifying world of being a newly diagnosed Pulmonary Hypertension patient. Like so many others, I didn’t know if I was going to live more than a few years. I simply did not have the energy or internal strength to take on another fight.

Turning point

I moved on from that job and began teaching online college classes, something I still do today. A little over a year ago I also started my own company teaching sign language to kids, caregivers, and educators.

Both jobs are independent contractor based. I have to consistently earn the right to do the work based on job performance. There is no guarantee of work, and no net to catch me if it goes badly. But it is work, and work I enjoy.

Because of my experience with the public schools, I have guarded the secret of my Pulmonary Hypertension almost fiercely from anyone I have contact with on a professional level. However, in my private life I am involved literally daily in advocacy and awareness raising, to the point where my activities have become public knowledge and widely chronicled online in my blog, Facebook, newspapers, radio interviews, and through work with PHA.  In short, if you Google my name, it’s connected with PH.

This has presented a huge professional dilemma.  I have worried constantly that word would get out and I would again find myself without employment because someone jumped to some conclusion about what PH means in my life, as far as ability to meet professional expectations.

Two semesters ago, this worry started to materialize. A college student (whose social boundaries I can’t help but question) did indeed do a Google search on me. Then he wrote me about what he found in regards to PH. It’s safe to say he did not understand what he was reading, but suffice to say, I was shaken.

I talked to a lot of my friends in Generation Hope about these concerns – should I just come forward and tell my employers? Their advice was good. In short, it was better to come forward and be in charge of what information got out, and how it got out, than to be blindsided by information someone found online and misconstrued.

Still, I dragged my feet for a while. I was comfortable just doing my job and being trusted as a professional based on the merit of my work. I did not relish the idea of having these good relationships tainted by something like PH, and had little reason to trust things would go well, since they had gone so badly in the past.

But finally, I got sick of it all. I got sick of worrying and hiding and screening friend requests on Facebook from people I actually wanted to be friends with, but also had professional relationships with. PH is such a big part of my life; I didn’t want to hide it anymore.

I started with the sign language company I do some independent work for. I called my national director, took a deep breath, and told her the story. She’s a wonderful lady, and her response was warm and supportive. Since that call, I’ve been hired to do even more work for them, and a pretty big project at that, so I feel it is safe to say things are going to turn out okay there.

The college was harder. It’s a more high-pressure job, it’s most of my income, and if I lose it, my family and I are going to be in a very difficult financial situation. Finally though, I just had enough of the hiding and tiptoeing around, not to mention I had my parents (who also work for the college) under gag order not to talk about my PH, and that was difficult for them as they couldn’t do any awareness work of their own with most of their community because of it.

I sat down and wrote a long letter to my supervisors at the college. I told them my story, and why I had hid it for so long. I emphasized that I remain, as always dedicated to my students. The response again has been supportive, as has follow-up communication.

Today

I’m slowly relaxing and getting comfortable with the word being out there, trusting that when the hiring season next comes around, my evaluations and work ethic will be what they look to once again.

Conventional wisdom says you should keep your professional and personal life separate, and to a point, I agree. Certainly I’ve seen the dark side to why that is. However, in the digital age this is becoming more and more difficult. There is something to be said for being in control of the situation and managing how and what gets out about your medical condition.

There’s not much you can do about how PH is going to affect your life sometimes. But there’s a lot you can do about how you react to and handle it, and how you use those times to educate others. The professional arena is just one more place to make those considerations…and sometimes a leap of faith.