Raising Rare

On this episode of Raising Rare we talk with Stacy Lloyd, a rare disease patient and board certified patient advocate. Stacy has dedicated her life, even much of her free time to healthcare in one way or another. She currently works at the American Medical Association, previously at Saavy Co-op, and is on the board of the VHL Alliance . After being diagnosed with Von Hippel-Lindau (VHL) at a...

As Raising Rare continues to grow and evolve we are going to start bring in professionals that have beneficial stories for Rare Parents. These are individuals who have dedicated their lives to helping families in one aspect or another as they care for their children. Their viewpoints, stories, and perspectives are uniquely beneficial to parents that are involved in the rare community. On...

On this episode of Raising Rare we talk with Megan Nolan, a rare mama working to make a difference for other Rare Families. Megan has launched the online magazine Rareparenting.com  in an effort to provide rare families with resources that may be beneficial to them.   Like so many other rare families, Megan has experienced the trials and tribulations of the healthcare system an...

This episode we are joined by Aisling Finn, an amazing poet and rare disease mama. As she shares her poetry with us, we react to the emotions, struggles, key moments and pain that are so clearly pictured in her words. Aisling shares with us the impact that writing poetry has had on her, and her expression of her feelings, and how they have helped her cope with her own rare mama journey.&...

On this episode in our Other End of the Tunnel Series we are joined by Mark Dant. When their son was just three years old, Mark and his wife were told that their son would pass within the decade after his diagnosis of MPS 1 and the lack of treatments available. As they laid on his floor listening to him breathe on the night of his diagnosis, they buried the home that might have been and...

Welcome back! We can’t believe we are already on our fifth season of Raising Rare. So much has happened since we started this podcast and we hope to keep evolving, growing, and bringing remarkable stories and individuals to all of our listeners.   What words would you use to describe your hopes for the coming year (or coming season of Raising Rare)? After a short break our...

We have had an amazing time sharing our stories and our guests with you this season. We hope that this season of Raising Rare has had as profound an impact on you as it has on us. This episode is sadly the last of the season, but we will be back again in January with a new lineup, some old friends, and continuing to share the stories that started it all. This episode of Raising Rare we c...

On this episode of Raising Rare we speak with Julia Taravella, the mother of two sons with a lysosomal storage disorder called AGU, Aspartylglucosaminuria.  At 2 years old, her boys first showed signs of speech delays which triggered a long journey to a diagnosis. Her bright, happy and helpful sons who run around the house adventuring, exploring, and learning new things, much as a 6...

On this episode of Raising Rare we talk with one of Kevin’s old colleagues, Vik Sharma. Vik is the father of two wonderful children Lily and Mira; Mira was born nonverbal and non-ambulatory due to Cerebral Palsy. Vik talks with our hosts about the importance of patience, the reality of impatience, and how humbling being a caregiver really is. As a seasoned caregiver, Vik discusses t...

Since last talking with Dillon earlier this year, he has faced some difficulties related to his mental health, access to medication, and not being granted access to a new clinical trial. It is always a pleasure to talk with Dillon and this episode follows suit. Dillon is a strong advocate for mental health awareness, especially within the rare disease community. In this episode, Dillon g...

On this episode we are able to interview one of our first guests again, Terry Pirovolakis. Terry gives us the update on what they have gone through in the last three years, his 4 million dollar gamble, a massive career change and how his son Michael is doing now after receiving a dose of gene therapy.  Terry’s breakdown of how they made decisions, saved time when able and what a wonderfu...

On this episode we talk with Kacy and Tim Wyman. Kacy is a 21 year old sophomore in college who was diagnosed with Cystinosis at the age of 4. Kacy has experienced a lifetime of medication to help treat her condition, and also anti-rejection medications in an effort to keep her donated kidney alive and well inside of her. Her father Tim was blessed with the opportunity to donate his righ...

This episode is a call to action, an opportunity to seek out available resources, and another connection to an amazing rare parent striving to make the rare community better. Sarah Spear is a rare mama who recognized a need in the community. After doing some market research, she determined that having a database available to the rare community showcasing businesses that are disability friendl...

Life with a rare disease changes everything for parents. What is the cost of stress? What is the cost of scheduling everything? What is the cost of explaining your situation...again? What is the cost of one more thing? On this episode of Raising Rare our cohosts have the opportunity to share the costs of Rare Diseases. Those costs reach so far beyond finances. Brittany and Sanath really dig into t...

Dillon Loomis- Head is a dear friend to Salem Oaks, a mental health advocate, a clinical trial participant, and a Friedreichs Ataxia Research Alliance Ambassador. The Salem Oaks team met Dillon a number of years ago and are thrilled to have him join the hosts of Raising Rare on this emotional episode to discuss his life experiences, clinical trial participation, and what it’s like living with FA (...

Cristol Barrett O’Loughlin, founder of  ANGEL AID CARES , was a caregiver to 3 of her brothers early in her life; now she works to care for caregivers. Cristol is focused on the mental health and wellness services of caregivers within the rare disease community, her lived experience created a passion to help. In this episode Cristol talks about the grief she has experienced in her l...

Later this year we will be talking to Kacy Wyman and her Dad, Tim. Kacy was diagnosed with Cystinosis when she was very young and is now in college. Her family has given her more than just support. You will need to listen to find out more. For now, use May 7 to raise the awareness of cystinosis and support the research efforts to find find improved treatments. www.cystinosis.org

Our goal is to provide a place where patients and parents can express their lived experience to provide hope and guidance to others. Our guests’ experiences vary widely and do not necessarily reflect the views and opinions of Salem Oaks or Raising Rare.   Patrick Girondi is an author, songwriter, singer, founder of gene therapy company, but most importantly a father. He started...

No one wants a phone call from the nurse at their children’s school. In the fall of 2020, Megan received that call and was told that her daughter, who previously showed no symptoms, had a seizure and was being taken by ambulance to the hospital. After a whirlwind of tests and doctors and not being sure what any of it meant or what was going on, they finally received news. Megan’s da...

You are good at so many things, but you are great at taking care of your kids and don’t ever question that. Caregiver to caregiver what you are doing is hard, but you are so good at it. Raising Rare is so excited to share this episode with you. Susan Geoghegan is an amazing mom of two rare babies given the challenge in life of Mitochondrial Disease effecting the FBXL4 gene.   S...

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. Jamas discusses their diagnostic journey and how it may be different from many other rare disease families, even those with the same disorder, his disbelief in what the treatment option is and hopes for a cure. Jamas and our hosts offer the...

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. We are all looking forward to new adventures, new opportunities, and new experiences as families, community members and political candidates. Sometimes just being back with good friends, who you will hopefully FINALLY meet in...

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 b...

From what they had for lunch to some of Kevin’s most meaningful moments. In this different episode, Sanath and Brittany ask Kevin about his experience at the 2022 Global Genes Patient Advocacy Summit. While we all planned to meet there, it just was not in the cards. Kevin recorded the episode on location from the Town & Country resort in San Diego. This year’s Summit was the first in-person on...

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 beco...