This Advocacy Group Is Changing Rare Disease Care | Hypopara Series: Part 6

In this special episode, Kerri Fitzgerald sits down with Patty Keating and Michele Rayes, the leadership team behind the HypoPARAthryoidism Association, to discuss and define what it means to have hypoparathyroidism, giving listeners a glimpse into the daily struggles and symptoms of individuals with hypoparathyroidism. The two women share recent wins for the Association and share how listeners can get involved and support the Association.

Kerri Fitzgerald:

We’re here today for an exciting conversation with the leadership team from the HypoPARAthyroidism Association. Today, I’m joined by Patty Keating, the Executive Director, and Michele Rayes, the Associate Director of the Association. Welcome.

Patty Keating:

Great. Thank you.

Kerri Fitzgerald:

Michele, I wanted to start by asking you, can you provide a brief overview of hypoparathyroidism and how it affects people for those listening who are not familiar with the condition?

Michele Rayes:

Absolutely. First, I’d like to start by saying, at the Association, we like to call it hypopara rather than hypoparathyroidism so that there’s no confusion about the disorder and the fact that it’s not actually related to your thyroid. Hypopara is a rare endocrine disorder that is marked by the fact that you have low calcium levels and low parathyroid hormone or PTH at the same time. Typically, that’s not the case in a normal human being. When your calcium is low, your parathyroid should go up. In our patient population, it’s like your thermostat is broken and so the PTH stays low and doesn’t signal the body to raise the calcium by pulling it from the bones or from the kidneys.

Typically, a patient would suffer from things like buzzing or vibrating sensations, something called paresthesia, which is that pins and needles feeling you get when your leg falls asleep. Only it happens all over our bodies all the time. Tetany or muscle cramps, those are the most common complaints. We also suffer from cognitive things like brain fog. We have people who have seizures from this disorder and you can have kidney problems, heart problems, a lot of other multi-system dysfunction. The most common things you’ll hear people complain about are the muscle cramps and the buzzing.

Patty Keating:

And the brain fog.

Michele Rayes:

And the brain fog, yes.

Kerri Fitzgerald:

I should mention that you both, in addition to working for the Association, you both live with hypoparathyroidism. You bring a personal touch to the work you’re doing with the organization. Patty, I want to ask you about the Association. Can you talk about the mission and goals?

Patty Keating:

Really our mission is to impact the lives of hypopara patients as well as caregivers, industry researchers, everybody that’s affected by hypoparathyroidism so that we can continue to create different treatments. Conventional therapy has been around for years, but we also know that a lot of our patients don’t always feel fantastic with conventional therapy. It’s not working for them. These new treatments are so important. We do everything that we can to be able to help with research, help with different advocacy things that we can do to really talk about it being a rare disease and how we need more attention paid to it.

Kerri Fitzgerald:

Attention from like research and clinicians and then as well as people who are living with it.

Patty Keating:

Absolutely. Investors, quite honestly, because we need people to really be able to influx into the disease so that we can create these treatments and care for patients living with this for generations to come.

Kerri Fitzgerald:

Yeah, because it’s a lifelong chronic thing.

Patty Keating:

Absolutely. Once you’ve got it, you’ve got it. I mean, there is research around potential replacements and things like that, but we’re probably years away from that. We need to be able to understand that when we’re diagnosed now, we need to plan for the life-long of it.

Kerri Fitzgerald:

Absolutely. For you both and the Association to make these impacts and achieve these goals, financial contributions help you accept donations. What do these financial contributions allow you to do, and what are some things you’re working on?

Patty Keating:

Over the last couple of years, we’ve really been able to ramp that piece up and as a result, we’ve been able to conduct even just to go to the FDA to be able to do our Externally-Led Patient-Focused Drug Development meeting, it costs a lot. It’s a big undertaking to be able to raise funds for that. We just recently started a podcast, which is exciting and fun where we’re talking to industry and researchers and doctors and patients and really putting patients with lived experience out there.

We host our patient conference every single year, which is a really big deal when we have community come together to be able to meet people. In rare disease, a lot of times you don’t know somebody else that has this rare disease, and being able to come together for 3 days and have the experts in the world come and teach you about your disease is just amazing. Of course, all of that costs a lot. Part of our role is fundraising and really helping people to understand the disease, what we need to do about it and to help us with their donations.

Kerri Fitzgerald:

Absolutely. To that point, Michele, where can people learn more about the association, get involved, and support in any way that they can?

Michele Rayes:

The best place to go to learn more about us is hypopara.org; we have a plethora of information there to support both patients and clinicians as well. We really want to highlight the fact that we have a robust YouTube channel of videos that are meant not only for patients to learn more about their disease, but for doctors out there who maybe got one paragraph in medical school about this disease because chances are they were never going to see it in their lifetime. If they happen to get that 1 patient, we need them to know that we’re here to support them as well and we’ve gotten the leading experts to explain about how to learn more about treating the patient as a whole patient.

Go to hypopara.org or to our YouTube channel and learn more about that. We also have on our website places where patients can sign up to volunteer, whether that be to volunteer to speak on panels. We keep a list of patients when a pharma or somebody reaches out and says, “We need a patient that meets these specific qualifications to do a little video for us or to sit on an advisory board.” They can also reach out to ask us questions or to help locate a doctor.

Connect with the HypoPARA Association:
https://www.hypopara.org/
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw
https://www.instagram.com/hypoparaassoc/
https://www.linkedin.com/company/hypoparathyroidism-association/

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