McNiff Family Fundraiser

“Do something, anything that resonates within you and with love.  You will be consoled in knowing you are moving forward when this disease wants you to go nowhere but back.”
-Britt McNiff

The McNiffs created this card to educate their community about Mimi’s PH and garner support for their fundraiser The McNiffs created this card to educate their
community about Mimi's PH and garner support
for their fundraiser. View larger image

After Mimi McNiff, age 5, was diagnosed with pulmonary hypertension, her mother and father, Britt and Sean decided to fight back by fundraising and raising PH awareness. Britt ran a half marathon and raised money for pediatric PH research through a personal fundraising page.

This is Britt’s story, from Mimi’s diagnosis to how she and Sean rallied their family, friends and community to help in the fight against pulmonary hypertension. The McNiff’s dedication and perseverance paid off. They raised more than $12,600 for the Robyn Barst Pediatric Research and Mentoring Program, which will award it’s first grant in 2013.

Mimi’s Diagnosis

Mimi was first diagnosed with a seizure disorder in November of 2011, but that diagnosis never seemed to fit what was going on with her. Nearly four months later she was diagnosed with idiopathic pulmonary hypertension and severe congestive heart failure. When Mimi was released from the hospital 3 weeks later she was put on an intensive medication regime, including continuous intravenous (IV) medicines administered directly into her heart and an uncertain prognosis. 

We could not believe the world and the life that we had just been flung into.  She had been previously "healthy" and we have two other kids. 

We knew our future was first taking the best care possible of Mimi (keeping her infection free and memorizing every nuance of the illness when it is aggravated) and then raising as much research money as our energy allowed us too! We felt like we were in too good of a position. We had to be vocal.

Empowered Through Connecting

Facebook, without a doubt, was instrumental in both learning how to cope with Mimi having PH and the success of my fundraiser.  We are inspired by parents of children who have had this disease for several years.  We learned, read and listened and cried and thought about how we were affected by these people's words and how we could in turn affect others.

The Facebook group "Families of Children with Pulmonary Hypertension" helped empower and inspire us.  Seeing what other people were creating for awareness was sometimes shocking but always validating and inspiring. 
I remember being awestruck by one of the moms who changed her Facebook profile picture to one of her daughter with captions of PH symptoms flying around.  I cried for days, and could not get that out of my head.  She had a beautiful girl too, older than Mimi but going through even so much more personally.  I contacted the woman and asked if we could sort of "copy" her idea.

We just wanted to do something that was as gripping because I knew if it would get my attention, it would surely grab our friends' attention and make the point.  These kids look so good (out of the hospital) and it is so hard to convey to people what PH is for our kids without feeling like you are becoming a "Debbie Downer."  Shock value I guess has been key for us.

Getting Started

Initially my husband and I had big ideas of throwing together a benefit concert (Sean is a musician), or a 5K fun run (I love these), but after speaking with staff at PHA, we realized that would take 6 months to 1 year of planning to plan and host a special event.  We still intend to do both of these, but we needed to be active and start raising money to find a cure, immediately. 

We knew that we were so lucky to have Mimi, but also that the clock was ticking.  Although there are "newish" medicines to treat, these only treat symptoms, and there is not a lot of data about the effects of intervention with children like Mimi.  This was before we had any idea about the Robyn Barst Pediatric PH Research and Mentoring Program. 

I had started doing some regular runs with a good friend because I was feeling terrible, really stressed, not eating well (and I'm a dietitian by training) and I was tired and depressed most of the time.  I always ran a little, but running was getting squeezed out of my life due to my three kids and the medical "stuff." 

My friend and running partner (and counselor by default), Jenn, told me about half marathons she had run in the past (5 to date) and the upcoming one she was doing: the Smuttynose Rockfest in Hampton, NH.  My in-laws live there, and my parents live 20 minutes away, so we could, between all the family gather a good crowd of support. And, racers are given beer and lobster rolls at the finish line. It was too good to pass up.

When I read further about the race I found out runners can take pledges for whatever charity they chose.  SOLD!  That day we created a FirstGiving page (the preferred online giving choice of PHA) with all moneys given directly to PHA.  When I learned about a brand new pediatric fund the Robyn Barst Pediatric Pulmonary Hypertension Research Fund, I decided to designate all my fundraised money to support it.

We started strong with a big Facebook plea to all our friends and sent emails to people not on Facebook. We asked everyone to please forward or share to anyone they thought would have a listening ear.

Going Above and Beyond

We used strong words.  We gave details we were uncomfortable giving, but we knew we had to bring about some real emotion in people. 

We periodically give updates about Mimi and fundraising efforts, and later we created a "Team Mimi" Facebook group. We have always divulged more of our story than felt comfortable.  Going beyond our comfort zone has helped us to elicit support and ultimately raise close to $13,000 for the Robyn Barst Pediatric Pulmonary Hypertension Fund.
By sending out Facebook posts and emails, a few people took on the mission and gave enormous sums of money and also wrote letters to local newspapers and our town email listserve.  This brought in additional funds and more importantly to us, awareness.

Every time I ran I wore a "Team Mimi" shirt and on the back said "Pulmonary hypertension:  Kids get it too. We need a cure" with the PHA web site. I always made sure to run against traffic for maximum viewing!  Sean listed the run on his company's website to enlist runners, awareness, and funds.

Benefits of Fundraising

Fundraising for us has been so cathartic.  I was worried we'd come off a big high after the event, but there are no real highs with this disease, so we are in the same place where we started.  It certainly has helped us work through our greatest fears, and feel like we know how to deal with communicating to people about this disease and communicating to people about Mimi in general. 

As a good friend told me (also a mother of another PH kiddo, and veteran with this disease) "we always walk a fine line. It's always a balancing act." 

We have realized that being very open and getting it all out there has worked for us.  We have made Mimi into a poster child, literally and figuratively.  We recognize we may not get points by all for doing so.  But for us, and in the community where we live, our language gives gravitas, and for us this is life or death. 

We recognize by putting up posters at the school ice cream social and selling things to raise money means stigma to Mimi.  We know that maybe some people will talk about the "ill child." We are OK with that, because that also may mean someone talks about PH and instigates research for a cure. 

Again, the three things that are our lifeline: 

  1. The best PH specialist care for Mimi;
  2. Taking the best possible care of Mimi by monitoring her closing and keeping her infection free;
  3. Fundraising for research and raising awareness about pulmonary hypertension.

For other families considering fundraising and raising awareness, I would very lovingly and loudly shout:  Take your tears, confusion, sadness, depression, heartbreak, sleepless nights, worry, fear, panic, anxiety all of it and throw it into a big bag of empowerment.  Do something with it. It's too precious, too important, and we DO NOT have time on our side.  Time is an enemy of PH.  Do something, anything that resonates within you and with love.  You will be consoled in knowing you are moving forward when this disease wants you to go nowhere but back.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.