Our Missions Align – Why We Partnered With the HypoPARA Association | Hypopara Series: Part 7

As part of this video series celebrating Hypoparathyroidism Awareness Day, Hero Philanthropy made a $2500 donation to the HypoPARAthyroidism Association. Patty and Michele, both advocates and heroes, sit down with My Hero 360’s Chris Ciraulo to discuss the ways in which the two outlets’ missions align. Both seek to spotlight the stories of individuals living with chronic rare health conditions, with the hoping of offering community and inspiration and to improve patient quality of life and outcomes.

Chris Ciraulo:

I’m so honored and grateful to be here today with 2 amazing not only advocates but heroes. They run the Hypoparathyroidism Association, and we just want to thank you for all that you do to try to help mankind, not only with the condition of hypopara but also other rare diseases that people suffer from. Your inspiration helps individuals with all rare diseases like we talked about.

We are here today and we are donating $2,500 to this amazing, amazing organization, and the 2 individuals here that run that organization. With no further ado, thank you very much.

Michele Rayes:

Thank you so much.

Chris Ciraulo:

Absolutely.

Patty Keating:

Thank you so much. We really appreciate it. On behalf of all of the patients, all of the people in our community, it’s really going to help a lot. Thank you.

Chris Ciraulo:

Good. We’re happy. Thank you.

Kerri Fitzgerald:

Chris, we’re here to celebrate a partnership between My Hero 360 and the Hypopara Association. Why did My Hero 360 and Hero Philanthropy want to partner with and make a donation to the Association?

Chris Ciraulo:

I just want to say that I feel like I know you guys already. Over the weekend, I was listening to some of your YouTube videos, and I thought they were amazing. We are in New York City celebrating with Michele and Patty, the organization that they represent, and no one is more excited than myself to be here with you today.

My Hero 360 has an important mission. That mission is to have individuals, we call them heroes or patient warriors, share their stories and have these stories be heard around the globe to help other individuals with similar conditions. What you all bring is something unique. Not only are you the heroes and the warriors, Patty and Michele, but you’re also running the advocacy for the organization. That’s very unique. What we found out over time with the videos that we produce is that it’s not just individuals that might have hypopara, but it’s individuals that may suffer mental darkness because of any rare disease, to be inspired by individuals like you. That is to me the most rewarding part of the content, the videos, that we create and then spread around the globe. Your original question, Kerri, I’m not sure if I addressed it.

Kerri Fitzgerald:

It sounds like what we’re trying to achieve is aligned with what the association is trying to achieve: spread awareness, education, and doing good. Doing as much good as we can.

Patty Keating:

It’s interesting because having got the disease 10 years ago post-surgical, I went into, “Oh my God, this is a life sentence. This is forever. What the heck has happened to me?” A couple years after I finally got it a little bit under control. I know I couldn’t change what had happened to me. I had to change moving forward and that’s really why I found the Hypopara Association and started volunteering. Then from there it was like, “Okay, we’ve got a lot of work to do because of all the new treatments that are coming out, or potentially new treatments coming out.” It helps with the focus, and it helps you live with the rare disease versus just kind of laying down with it.

Chris Ciraulo:

When I think of My Hero 360, I think of the 3 power adjectives that we have that describe the brand. I’m sure you saw it in your research. When I think of that, I really think of you, Patty and Michele. It’s about inspiration, it’s about empowering other individuals, it’s about impacting individuals, and you have all those characteristics. It’s pretty amazing. Just because you have a rare disease doesn’t mean you can’t live your best life, and that’s the message that we’re trying to spread here. How can Patty, how can Michele, or anybody else live their best life? Just because we have a rare disease does not mean that we cannot live our best life and that’s really what we’re trying to do here.

Michele Rayes:

It doesn’t matter what rare disease we’re coming from. All of us share this same purpose, and sometimes even though I’m speaking about hypopara, I could be talking to someone with any rare disease because it is about the inspiration and the empowerment, and how do we take our new normal and make the best life out of it?

Kerri Fitzgerald:

Absolutely.

Chris Ciraulo:

Absolutely.

Kerri Fitzgerald:

That’s a theme we hear a lot in people that we talk to with the work we do in my Hero 360. You may have a rare disease, but there’s so many rare diseases. The rare disease community is actually much larger than a lot of people might know, and there’s some overlapping themes of what it’s like to consider…like you said, your new normal, your new life. I can imagine you have a lot to talk to other people about…

Chris Ciraulo:

I’m sure you meet with some amazing individuals, some amazing heroes.

Patty Keating:

We do.

Chris Ciraulo:

Physicians, warriors, patients, heroes, and advocates.

Kerri Fitzgerald:

I think through your work with the Association, you know that it takes everyone involved, right? Researchers, clinicians, patients…

Patty Keating:

Completely.

Kerri Fitzgerald:

…Industry that’s researching, that’s coming up with possible treatment options. It’s really awesome that you bring all those stakeholders together to make a difference.

Michele Rayes:

Yes, because if we don’t get everybody to the table, your work’s not going very far. We need the physicians and the researchers to want us to be at the table, because if they don’t understand the lived experience, their endpoints mean nothing.

Kerri Fitzgerald:

Yes.

Chris Ciraulo:

It takes a village, doesn’t it?

Michele Rayes:

Yes.

Patty Keating:

Surely does. We recently interviewed Dr. Mannstadt for the podcast, and one of the things I said to him that I admire about our medical advisors is we have a patient conference every year that’s 3 days long and they speak for 1 hour. Do you know they stay the entire weekend with all these patients and they interact and…oh my goodness all teared up about it, because it just warms my heart that there are true people that really, that they’re spending their life learning and being able to treat these hypopara patients. It’s a community. We’re very, very lucky in the hypopara space.

Chris Ciraulo:

You really are. It’s a community. We don’t always see it that way.

Kerri Fitzgerald:

Chris, how would you say My Hero 360 and Hero Philanthropy’s mission and goals align with that of the Hypopara Association that Patty was just outlining?

Chris Ciraulo:

No better alignment, for sure. Just to remind everybody that My Hero 360’s mission is to create this incredible content with heroes like who we’re here with today, and to spread that word and to better quality of life and patient outcomes. That’s our goal. Then with Hero Philanthropy, it’s quite simple. With Hero Philanthropy, we just want to spread kindness. We want kindness to go viral.

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/

About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.

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https://myhero360.com/
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Listen to Our Heroes’ Stories: 
Apple Podcasts: https://podcasts.apple.com/us/podcast/my-hero-360/id1870681068
Spotify: https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334
Amazon Music: https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360