Our guest this week is Hugh Hempel, a technology industry veteran turned health care entrepreneur and father of identical twin daughters with Niemann Pick Type C.
Hugh and his wife Chris, have been married for 25 years and are the proud parents of identical twin daughters Addison & Cassidy. The girls were born in January 2004 and were both diagnosed with Niemann Pick Type C, a type of childhood ALS, a very rare neurogenerative disease. Despite heroic efforts to find a cure and treatments, very sadly the twins passed away in 2019 at age 15.
After a successful tech career that included working at: IBM, Apple and Netscape, to name a few, and as a result of the twins' diagnosis, Hugh & Chris became outspoken advocates for rare disease research. They also created the Addi & Cassidy Fund, a resource for families impacted by Niemann Pick, Cyclodextrin, and a myriad of stories, and resources for families impacted by a wide range of rare diseases.
Hugh has also served in a wide range of leadership positions, including Solutions Therapuetics, Sparkpr, Parent Advocist, N=1 Collaboration and Strainz.
In January 2015 Hugh gave a TEDx Talk presentation entitled: Why I Changed My Mind About Medical Cannabis, coincidentally on Addi & Cassidy's 11th birthday.
We’ll hear about the Hempel family and about Hugh and Chris’ quest to find a cure and treatments for rare and ultra rare diseases, all on this episode of the SFN Dad To Dad Podcast. This is the final sintallment of this two part interview.
Show Links
Phone - (775) 338-4844
Email – Hugh@Hempelfamily.com
LinkedIn – https://www.linkedin.com/in/hughhempel/?skipRedirect=true
Website – N=1 Collaboration – https://www.n1collaborative.org/
Website – Addi & Cassie Fund - https://addiandcassi.com/
TEDx Talk – Why I Changed My Mind About Medical Cannabis (January
2015) - https://www.youtube.com/watch?v=3N8QMeIsX2c&t=1s
Dr. Sanjay Gupta CNN story (11.22.14) -
https://vimeo.com/420572177?fl=pl&fe=vl
Mayo Clinic NPT1 - https://www.mayoclinic.org/diseases-conditions/niemann-pick/symptoms-causes/syc-20355887
MIPLYFFA Website - https://miplyffa.com/
Special Fathers Network –
SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: “I wish there was something like this when we first received our child’s diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through.”
SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.
Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videos
Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/
Special Fathers Network: https://21stcenturydads.org/
SFN Mastermind Group - https://21stcenturydads.org/sfn-mastermind-group/
Special thanks to SFN Mentor Father, SFN Mastermind Group dad and 21CD board member Shane Madden for creating the SFN jingle on the front and back end of the podcast..
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