ONCE UPON A GENE - EPISODE 211

The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia

Rare disease parents and front line advocates, Kim Nye and Mike Graglia, join this episode for a discussion about the unseen struggles of rare disease parenthood and the delicate balance of operating an advocacy organization.

EPISODE HIGHLIGHTS

Kim, can you share your perspective on how much work it is to lead an advocacy organization and the impact it has on balancing your role as a parent?

At first, it seemed like something to do on the side, not a job or career, but a calling or a passion project. With so much emotion and heart behind it, it was easy to fool myself into doing the work a few hours a week, but it's actually running a small business. It very quickly became a full time job that really seeped into every moment of the day. Because there's so much passion driving it, I willingly do it by day and on the weekends. There's a level of guilt wondering if you're handling your home front well enough while fighting the battle for your community.

Mike, can you share your perspective on how much work it is to lead an advocacy organization and the impact it has on balancing your role as a parent?

In a single morning, I can go from a call with an investor in the morning, to a lab who needs money to keep working, to a mom who has just received a diagnosis, to a board member who wants to know why a project isn't done yet, to my own child who is screaming out for my attention. There are moments I wonder if I'm doing what's best for my child, going from a heavy intellectual endeavor to a moment where I question if I'm a good enough parent or spouse. The struggle is intense sometimes and there are days where your resources run low.

What key lessons have you learned along your journey and what advice do you have for others?

For new families, don't reinvent the wheel where you don't have to. Look for opportunities to collaborate with other groups. Think long term because your mindset when you receive a diagnosis and you're panicking is very different from reality of what's ahead.

How do you anticipate rare disease evolving from your contributions?

As frustrating as it is not having treatments for our children and communities, I think we are making progress and I can see the return on investment in terms of getting funding and watching the research grow. Progress is never fast enough for affected families, but we will see improvements and treatment options.

What is your advice for other foundation leaders and advocates who are trying to find balance in their dual role?

You'll be exhausted and have down moments, but then you're also going to meet the best people and rally and do great things. Protect your time and focus on what really matters, including your own family and your health. The work of the foundation will evolve and you're in this for life, so get out of panic mode and plan your time accordingly.

LINKS AND RESOURCES MENTIONED

Tess Research Foundation

https://www.tessresearch.org/

SynGAP Research Fund

https://curesyngap1.org/

ONCE UPON A GENE - EPISODE 041 - Time is Brain: SYNGAP Research Fund with Mike Graglia

https://effieparks.com/podcast/episode-41-syngap-research-fund

ONCE UPON A GENE - EPISODE 057 - SLC13A5 - TESS Research Foundation with Kim Nye

https://effieparks.com/podcast/episode-057-slc13a5-tess-research-foundation-kim-nye

ONCE UPON A GENE - Episode 094 - The 12 Commandments to guide you when you're starting a rare disease patient advocacy group wiith Nasha Fitter and Mike Graglia

https://effieparks.com/podcast/episode-094-mike-and-nasha

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