On this episode of Raising Rare, we have the opportunity of talking with Jamas LaFreniere the father of a daughter with Glycogen Storage Disorder Type 1B. He talks with Sanath and Brittany about the importance of creating an umbrella organization to bring everyone together and give doctors and patients a place to really learn more.

Welcome back to Season 4 of Raising Rare.

It’s great to be back as co-hosts and talk about changes in our lives, holiday struggles, and hopes for this year.

Thank you for joining us for the first rare disease anonymous meetup. On this episode we talk to fellow podcaster and rare parent Gary David about the uncertainties of raising a rare child.

Gary has used his experience as an adult child of an alcoholic to better himself as a parent, partner, professor, and person. He began attending 12 step recovery meetings over 6 years ago, and the connections between his experiences growing up and his experience raising a child with a rare disease are impactful. Together, we discuss the powerlessness of being a parent to a rare child, the importance of focusing on your reaction, and the importance of self-care while doing so.

Listen along as Gary describes to Sanath the similarities between the popular show Naked and Afraid and meeting his own needs as a parent and where he needs to put his focus first. Think building a house in the forest instead of feeling as if you need to fight off the forest.

One of those needs is the importance and power of connections formed with people going through similar realities (Al-anon, parenting a child with rare disease, sports, etc.) As you are able to connect with a community based on common ground, it strengthens you.

Thank you for joining our first meetup. Please keep coming back. If you are interested in taking part of a rare disease anonymous meetup, please reach out to us, Podcast@salemoaks.com . To learn more about Gary or listen to his podcast, please visit www.garycdavid.com .

We look forward to sharing our stories and connections with you again next season.

In this different episode, Sanath and Brittany ask Kevin about his experience at the 2022 Global Genes Patient Advocacy Summit. Kevin recorded the episode on location from the Town & Country resort in San Diego.

The experience of being back together was powerful. The tone of the conference was much more patient- and caregiver-centered than before. Sessions about mental health, relationships, and managing life with Rare Disease.

We spoke to Casey McPherson during the recent Global Genes Patient Advocacy Summit in San Diego. Casey’s daughter Rose has HNRNPH2 (www.tocurearose.org ) He has made the extraordinary step of starting his own lab. Even more wonderful is that this lab is committed to providing a more efficient, accessible lab capability to other parents looking to find a treatment for their kids. This lab has become www.everlum.bio that offers preclinical services without the bureaucratic hurdles and delays.

Casey is a very creative guy, a songwriter and musician that has toured the world. He has now become the Chief Innovation Officer of Everlum – the guy with all the crazy but brilliant ideas. He knows he needs a team of other creative experts around him to make them a reality. “You know not that you know not... so you surround yourself with people who know the not that you do not know.” The problem that he is trying to solve is so obvious that it is drawing talented people toward him.

When we first met, Raghav was just one year old, and they had just gotten his diagnosis. That was 3 years and 50 episodes ago. Raghav is now 4 years old and Sanath has started a new non-profit organization called Open Treatments. In this episode we talk about both.

The birthdays bring a lot of emotions. Each one is precious. At the same time, today’s technology brings back all the memories leading up to his birth and then the first weeks of his life. Happy highs and scary lows.

Open Treatments started with very high expectations to address some of the biggest challenges to developing treatments for kiddos like Raghav. Sanath has learned that there are such fundamental pieces of the puzzle missing that it is impractical to solve the bigger problems yet. He has deftly pivoted Open Treatments to focus on one of the simplest problems – counting. He explains how the Chan Zuckerberg Foundation helped him sharpen his focus and eventually fund the work. The result, the Open Treatments Connect project.