Marc and Margarete Cassalina are amazed at the progress made to raise CF awareness since they attended the launch of the Congressional Cystic Fibrosis Caucus in September 2006.
When Marc and Margarete Cassalina, from Milton, N.Y., had their first child Eric 16 years ago, they were shocked to learn that he had cystic fibrosis, a disease they had barely heard of. Two years later, Jena was born and also diagnosed with CF. Determined to provide the brightest future for their children, the Cassalinas became active CF Foundation volunteers, participating in countless fund-raisers. As co-chairs of the Volunteer Leadership Initiative from 2004-2007, they also led the Foundation’s efforts to recruit new volunteers.
Recently, the Cassalinas expanded their efforts to become advocates on behalf of the Foundation. They spoke to Commitment about their experiences and reflected on their daughter Jena, who passed away last December at age 13.
Why do you think it’s important for volunteers to take their message to the Hill?
Marc: Bringing our mission to Capitol Hill and getting our congressmen and women and senators to support us can translate into increased awareness about the disease and extra funds for research. I think that when our government understands that CF is an orphan disease and that the research dollars are not funded by big pharmaceutical companies, they may recognize the urgent need for increased funding for CF research and be more likely to help.
We don't have time to lose. We needed this cure yesterday."
mother of Jena and Eric
Can you describe your experience as a Foundation advocate on Capitol Hill?
Margarete: On the Hill, you meet with staffers for 15-20 minutes or you may get to meet with your own representatives or senators.
The first time was very intimidating. You don’t know what to say. You don’t think you have enough knowledge. You don’t know if they’re going to listen to you. The next thing you know, you realize that you are the expert on CF. You’re the parent. You know about the doctors. You know how much it costs. You know how much we need to raise for research. You know what new drugs your kids take thanks to the therapeutics development pipeline. It wasn’t long before I realized that I can do this, and I need to do this.
How do you prepare for these meetings?
Margarete: The Foundation fully prepared us for our visit, helping us tell our story on a personal, medical and financial level. After the meeting, I always follow up with an e-mail, fax or letter and thank them for their time and/or support.
What was it like to take part in the Foundation’s “March on the Hill” this past spring?
Marc: It was great. We saw real progress. Two or three years ago, we were asking about the Congressional CF Caucus. Last year, Margarete and I went to the caucus kick-off, and this year we and 40 other Leadership Council members had the chance to invite more people to join it.
What would you say to people who believe that talking to their elected officials won’t make a difference?
Margarete: At first, I thought, “There are so many people in this country who have something to say. They’re not going to listen to me. Who am I?” The truth is, they do listen. They do respond. They do follow up. It does make a difference.
On the Hill, we had the chance to lobby members of Congress to join the CF caucus. We met with Congressman James Clyburn, the majority whip, and his deputy chief of staff. After our talk, they were enthusiastic supporters and agreed to get the other South Carolina rep to join the caucus too. In the end, we got two “yeses” simply because we asked.
On Jena’s birthday this past year, a flag was flown at half-mast at the Capitol. Can you tell us about that?
Marc: We really didn’t know what to do on her birthday. Our calendars were jam-packed, but her birthday was empty. My father called and said that the senator of Alaska [Lisa Murkowski] offered to fly the flag over the Capitol building in Jena’s memory on her birthday. It was a great way to celebrate her. To me, the flag represents freedom, but it was freedom for Jena too. She was free from the pain and suffering of CF.
Margarete: Honestly, I thought I’d spend Jena’s birthday in bed with tissues and a bottle of wine and feel sorry for myself. Thankfully, it turned into a celebration in a very Jena-like way... a flag waving against a blue sky. It was like she was waving to the world saying, “Here I am. Celebrate my life.”
CF Foundation volunteers have sent more than 5,000 letters to Congress this year.
What would you say to a parent who has lost their child to CF?
Margarete: Your child is always with you. The determination and spirit Jena had are always with me now. I love my daughter. I loved her then. I love her now. Love never ends. That’s my best message from me as a mom.
Marc: I’d like to speak to the people who are still battling CF. What gives us a great deal of comfort is that we don’t have any regrets. We can look at ourselves in the mirror and know that we did absolutely everything we could—from seeking out the best treatments and the best doctors to raising as much money as we could and spending quality time with Jena and Eric.
Margarete: Yes, make it happen. We took Jena and her IVs on a cruise and in the RV to Mount Rushmore. We didn’t let CF control what we define as life. We never did. We lived every moment until the end.
How do you help a child, especially one with CF, cope with a brother or sister’s death?
Marc: Helping Eric cope with it is helping him recognize—something he already knew—that the expression of the disease is very different in each individual, and their outcome is going to be very different. I think reinforcing that is the way we help cope with it. At the same time, it’s a reminder that he’s got to continue fighting. He has to do his treatments every day.
How has Jena’s spirit further strengthened your resolve to help find a cure for CF?
Margarete: We repeat to ourselves a quote Jena had written down for herself, “Pain is not a valid reason for stopping.” No matter how much emotional pain we’re going through, it’s just not a valid reason for stopping our mission to help others and find a cure for CF. We also have Eric, which makes the fight that much more vital to continue. We don’t have time to lose. We needed this cure yesterday.
Marc: As soon as Jena could catch her breath, she’d say, “Okay, let’s go.” I constantly see that image in my mind whenever I feel like I don’t want to continue this fight. I see her battling CF, battling to breathe and as soon as she could, she’d say, “Okay, let’s go.” I use that to motivate myself. If she could do it, I can do it.