Megan is a rare mama to two 18 year old daughters that have been diagnosed with Familial Cerebral Cavernous Malformation (FCCM), and a teenage son that is a freshman in High School. Listen to the episode to hear more about her journey, how she has handled the changes in her families life, and how her career has changed because of it.

Susan’s journey into parenthood was not what she had planned, but as a business owner and wedding planner she soon learned that she was going to have to plan things in a much different way and pivoting always had to be an option.

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.

The impact of having a rare child can be overwhelming. Parents can find themselves in a dark place and defeated. We welcome back Brittany Ratke who found herself in that place and was struggling. Fortunately, she learned about a fantastic program known as Angel Aid that provides support and self-care skills for rare moms.

Brittany decided to apply to the M.O.R.E. program and raise the funds to attend. M.O.R.E. stands for Mothers Of Rare Experience. This virtual program brings moms together to build relationships, learn how to take care of themselves, and experience different types of therapy.