Rare Disease Day is approaching and we are shining the Caregiver Spotlight this week on rare disease advocate Kerry Hughes. Kerry was inspired to start her organization Harmony 4 Hope because she wanted to help families who are impacted by rare diseases after witnessing her friend’s experiences.
Listen to the show: Caregiver Spotlight – Kerry Hughes
Today’s Show Sponsor
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Words of Encouragement
Each episode starts off with a few words of inspiration or motivation that is pulled from the Happy Healthy Caregiver Jar.
Links & Resources Mentioned
- Kerry is the Founder and President of Harmony 4 Hope, a charity organization merging music and storytelling. Launched in 2014, Harmony 4 Hope helps fuel scientific discovery in rare disease, educate future physicians and uplift affected families with gifts of music and music therapy.
- A rare disease is defined as 200K or less people with one specific diagnosis.
- 350 million people worldwide (175 million are children) impacted by 7,000 distinct rare diseases.
- Elizabeth’s nephew has Smith Magenis Syndrome
- Two other great resources related to rare diseases that Kerry mentioned: National Organization of Rare Disorders and Global Genes.
- Listen to Adrienne Provost’s Caregiver Spotlight. Adrienne is one of the Rare Storytellers for Harmony 4 Hope that helps educate medical students through their powerful narratives which impacts the future landscape for rare disease.
- Music is a mood changer. Elizabeth echoes this in this post or this podcast episode.
- Songs to inspire any caregiver – Caregiver Anthems!
- Rare Disease Day is February 28th, 2019. This year’s theme is bridging health and social care. Register for the free Rare Disease Day event on February 27.
- Order your personal copy of the Just for You: a Daily Self-Care Journal which will help you be intentional with your self-care.
- Find out how you personally respond to expectations by taking Gretchen Rubin’s Four Tendencies Quiz.
- Kerry is focusing on worrying about her kids less and Elizabeth mentioned how children can be part of their care team. Related post about becoming dispensable (vs. indispensable) as a family caregiver.
- Whether you care for someone with a rare disease or not, be a #RareRockstar and join the Rare Disease #PlayThisFWD campaign for #RareDisease by leaving a comment on Harmony 4 Hope’s Facebook or Twitter page with your song request to be add to the H4H Rare Playlist on Spotify.
- Spotify’s H4H Rare Playlist for 2019 is continuing to grow!
Favorite moments & quotes from the episode
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