PA Rare Disease Leader Profile: Caryl Harris of Avery’s Hope

This is the first in a series of profiles of leaders of rare disease organizations based in Pennsylvania.

Mission of the Organization: Avery’s Hope raises money and awareness for rare pediatric GI patient families assisting with out-of-pocket and insurance denied expenses.

Rare Disease(s) Covered by the Organization: All rare gastrointestinal (GI) diseases as well as GI issues caused either by disease or by-product of treatment.

How You Got Involved with the Organization: My husband, Eric, and I founded the organization three years after our grandson was diagnosed with Microvillis Inclusion Disease. We had a front row seat to all of the challenges, heartbreaks, and hope. One of the things that disturbed us a great deal was the financial strain we observed. It wasn’t just what insurance wouldn’t cover; it was the expenses and life changes that no one really discusses, such as loss of income/jobs/insurance, travel to and from appointments, the extra cost of diapers, hospital stay parking and so much more. It was then that we made the difficult decision to not fund research (which is so incredibly important) but to fund patient assistance funds at major children’s hospitals as well as assisting individual families directly.

What You Are Most Proud of or What You Are Excited About Doing Next: Proud is really the wrong word. I am incredibly grateful that this little all-volunteer organization has made a small difference in the lives of families struggling to hold their lives together while undergoing such a financial burden.

What You Find Most Rewarding in Your Role: Every so often we get to meet the families or a family member that we have helped with their financial obstacles. Having a connection and putting a face to the award application makes the experience human and so very rewarding. I just wish we could help more.

What You Find Most Challenging in Your Role: Because we are funded by fundraisers and some grants, it is so very difficult to grow our donor base. By not funding research, we have found that people are more reluctant to give. Because of that we create fundraisers throughout the year that people would like to participate in regardless of charity affiliation. These include bicycle tours, 5K’s and mini golf outings. These are big undertakings and require a large group of volunteers, time and focus. Everyone on the board is a volunteer working a full time job, and I still have my day job. This creates challenges with the time I need to focus my attention on raising money for the families we support.

Resources You Recommend to Other Rare Disease Advocates: The National Organization for Rare Disorders (NORD) has been extremely helpful in bringing our organization to the next level and I strongly suggest that all advocates involved with rare organizations create a relationship with them. Global Genes and the Rare Patient Alliance have also been extremely helpful. I also think that building relationships with other advocates is critically important. We may all be involved with different disease groups, we may focus on children, adults or both, but we are all struggling with similar scenarios and we need to rely on each other and help each other. We are not alone in this.

Any Advice You’d Like to Share with the Rare Disease Community in PA: I don’t really think I’m in a position to give advice, but there is one thing that I have learned in the past few years….do not be afraid to use your voice for change, right a wrong or help a patient in need. We had a family apply for an Individual Award, and because of the size of our organization and the limits on our resources, we are only able to give up to $600 per individual family. It was brought to our attention that this family was now in collections due to the fact that their son’s medication was not covered by their insurance and it was given as an infusion which was the real problem with the insurance. We started a fund at this particular hospital and the family was not offered the opportunity to apply for funding through that fund. I called Child Life, reminded them about the fund, explained the family’s situation (which they should have been aware of), and they were out of collections within a few hours. Do not be afraid to use your voice. You never know how much of a difference it can make until you try.

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