Five Questions With: Shannon Reedy

Executive Director Shannon Reedy of Cumberland founded the nonprofit Chase the Cure Inc. after her youngest son, Chase, was diagnosed with a terminal lysosomal storage disease known as Niemann Pick Type C (also referred to as childhood Alzheimer’s because of its symptoms), shortly after his second birthday in October 2011. The mission of the nonprofit, which became a 501(c)(3) in 2013, is to help move treatments for the disease out of the lab and to patients. Part of the goal is to help fund trials already underway and to fund smaller labs “with great ideas” so they have the resources to pursue treatment, Reedy says. Here Reedy discusses the nonprofit’s origin and mission in greater detail.

PBN: When you started this nonprofit in search of a cure for your son’s disease, what was your primary aim?
REEDY:
My primary aim had always been to save Chase, but the focus of the nonprofit is also to support health for people suffering from this disease.
When the diagnosis was confirmed on Sept. 21, 2011, I launched into a state of hyperactivity. I had suspected what we were going to hear and knew two places I could go for information and potentially help, the National Niemann Pick Disease Foundation and a family in Reno, Nev., the Hempels, who had twin daughters with the condition.
The first call I made after the diagnosis confirmation was to that family. I’d been too timid to reach out before I knew for sure, but now that we were in the “club,” we were going to be participating members. Christine Hempel helped me that day, she reined me in. This family and one other I would learn about on the call, the Hadleys of Medford, Ore., were working with researchers and doctors to treat their kids, where no treatments existed. Chris had me questioning everything, assessing motivation and encouraging me to research until I was satisfied. Her family runs a nonprofit as well, the Addi and Cassi Fund.
Initially, on our call I was focused on raising money, but throwing money at existing institutions in this case would not accomplish my aim, to save my son. Formal trials were years off. A call to the NNPDF let me know that they could not offer me information to save Chase. It is a place to seek published information and a tremendous source of support for families, but they’re not able to offer information about experimental options. The National Institute of Health agreed to see my son and enroll him in a history study, which we did.
Creating a nonprofit that we could use to get money to hospitals willing to treat patients with the disease with promising compounds, getting research dollars to scientists willing to openly discuss their potential and helping families learn about additional options became our focus. A finger on the pulse of the research gave Chase the greatest chance. Thus, Chase the Cure Inc., came to be.

PBN: How did you find other people suffering from the disease like JP and Rachael? When you say rare, how many people like them are living with this disease?
REEDY:
The Internet. In March of 2012, a few of us ended up launching a private group on Facebook. We considered other platforms and servers, but it’s complicated; living with a chronically, terminally ill child is hard enough. Connections were made simple with Facebook.
At this point we have 300 families, researchers, doctors, supporters from around the world that have private conversations that change the course of dosing and treatment for our kids. Loose estimations are about 500 known families living with this worldwide. Statistics suggest an incidence of one in every 150,000 people. There are a few public groups as well through which we are able to connect with other patients. The NNPDF also hosts an annual conference for all the families; it is where many of the connections are forged. Rare disease groups like NORD and the Global Genes project do tremendous work to connect rare disease patients as well.

PBN: Where do you get your major funding support, and how do you fundraise?
REEDY:
Parent efforts comprise our funding support. The Honsinger family of Albany, N.Y., “Team JP” has an incredible community that has not stopped the flow of research dollars since they learned about JP. That community is humbling. The Flinton family of Albany, who lost their 5-year-old son, Dan, in 2011, supports grassroots fundraising efforts, and the Kaflowitz family of New Jersey has run several campaigns. It is through the relentless efforts of the families that we raise each dollar. There is some grant writing done as well, but the bulk is grassroots fundraising.

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PBN: At age 6, what does Chase think about being a namesake for a cause? How much does he understand about your mission on his behalf? And how’s he doing medically?

REEDY: Chase’s communication is limited to eyebrow raises, smiles, frowns, arm lifting and we’d swear to the occasional eye roll. This disease is variable; it onsets differently and progresses at different rates. At age 2, the medical community didn’t think Chase would survive very early childhood. He’s 6½ now. Chase smiles appropriately and laughs at things most 6-year-olds would find funny. His whole life has consisted of medical appointments and hospital stays. It is not likely that it has occurred to him that his life is an anomaly. He is happy and that is all we can hope for at this point.
PBN: Boston Children’s Hospital has just signed up as a trial site for a drug Chase has been on since 2011 and will soon launch a formal patient trial. What does this mean to Chase and to the nonprofit?
REEDY:
This is an exciting time for other families who were not able to access a drug Chase has been taking under a so-called “compassionate use” protocol for four years. A company called Vtesse is working with the National Institute of Health and is now handling phase 2 of this promising drug and Boston Children’s Hospital is an approved site for the phase 2 trial. It’s also wonderful that other local families that were in phase 1 of this trial when it launched can stop flying to the National Institute of Health eventually and get treatments closer to home. We will continue to support the hospital and hope to help other families who want to access drugs but don’t have trial-eligible children.

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