The "Rare Barometer” Is Helping Eurordis Shape EU Rare Disease Policies & SMA Community Diversity

The "Rare Barometer” Is Helping Eurordis Shape EU Rare Disease Policies & SMA Community Diversity

We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about diversity within the SMA community. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

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#156: Maylan Chavez and Sory Rivera: Friends and podcast hosts with SMA

#156: Maylan Chavez and Sory Rivera: Friends and podcast hosts with SMA

In episode 156, host Kevin Schaefer talks with Maylan Chavez and Sory Rivera, two friends with SMA who host the “Access Granted” podcast together. Maylan is from Hialeah, Florida, and Sory is from Tyl...

16 Helmi 53min

#155: Jasmine Jackson, digital creator and mother with SMA

#155: Jasmine Jackson, digital creator and mother with SMA

In episode 155, host Kevin Schaefer talks with Jasmine Jackson from Vancouver, Washington. Jasmine is a development and marketing manager, digital creator, and also a mother living with SMA type II. S...

19 Joulu 202540min

#154: Coach Damon Vincent, adaptive fitness specialist

#154: Coach Damon Vincent, adaptive fitness specialist

In episode 154, host Kevin Schaefer talks with Coach Damon Vincent from Lafayette, Louisiana. Damon is an adaptive fitness specialist who works with clients with various rare diseases and disabilities...

17 Marras 202535min

#153: Annie Heathcote, Entrepreneur and Speaker with SMA

#153: Annie Heathcote, Entrepreneur and Speaker with SMA

In episode 153, host Kevin Schaefer talks with Annie Heathcote from Mazomanie, Wisconsin. Annie is a multi-business owner, social media influencer, author, and lifelong disability advocate whose life ...

25 Syys 202530min

#152: Kamil Goungor, Disability activist

#152: Kamil Goungor, Disability activist

In episode 152, host Kevin Schaefer talks with Kamil Goungor from Athens, Greece. Kamil, who has SMA type II, works for the European Network on Independent Living and is the co-founder and chair of th...

28 Elo 202545min

#151: Anton Paras, marketing executive in digital health

#151: Anton Paras, marketing executive in digital health

In episode 151, host Kevin Schaefer talks with his colleague, Anton Paras. Anton is a marketing executive for Bionews Inc., the publisher of SMA News Today, and he lives in the Bay Area, California. R...

30 Heinä 202536min

#150: Jenna and Tanya Vega share their love story

#150: Jenna and Tanya Vega share their love story

In episode 150, host Kevin Schaefer talks with Jenna and Tanya Vega from Palm Springs, California. Jenna and Tanya discuss their seven years together, navigating daily life with SMA, and their wedding...

1 Heinä 202528min

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living ...

21 Touko 202541min

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