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To Your Health: NLM update Transcript

Ara and Jerry's kids: 09/05/2017

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Greetings from the National Library of Medicine and MedlinePlus.gov

Regards to all our listeners!

I'm Rob Logan, Ph.D., senior staff, U.S. National Library of Medicine (NLM).

Here is what's new this week in To Your Health, a consumer health oriented podcast from NLM, that helps you use MedlinePlus to follow up on weekly topics.

The recent deaths of former Notre Dame football coach Ara Parseghian and comedian Jerry Lewis remind us of the different approaches celebrities use to raise funds to treat diseases and support medical research.

The New York Times reports comedian and actor Jerry Lewis raised about $2.7 billion for muscular dystrophy during his Labor Day telethons for four decades as well as other fund raising efforts. Lewis won an Oscar in 2009 for his humanitarian efforts.

Lewis attracted major entertainers, including singers, actors, and television personalities, and created a high-profile venue to raise funds for muscular dystrophy treatment and research, which was co-hosted by a network of local television stations across the U.S.

However, Lewis' show business pizzazz was supported by fund raising from local schools, companies, organizations, unions, and memorably by fire fighters across the country, who sometimes asked contributors to fill fire boots with donations. In other words, Lewis' glitz was integrated with a more down home, organized neighborhood effort in many parts of the U.S.

In contrast, Ara Parseghian, who was one of the most successful college football coaches in the 20th century, used his contacts in sports, broadcasting, universities, and public affairs to quietly raise more than $40 million for research on Niemann-Pick type C disease. While Parseghian eschewed telethons and health fund raising publicity, he often spoke about the contrast between the vigor of his famed college athletes and the health of children who suffered from genetic diseases and conditions.

The Guardian reported the Ara Parseghian Medical Research Foundation, which Coach Parseghian created during his career, was devoted to research for multiple sclerosis and Niemann-Pick type C disease. After the end of his coaching career in 1974, Parseghian received an honorary degree from Notre Dame for his efforts to boost medical research regarding genetic diseases.

The Guardian explains three of Parseghian's grandchildren died from Niemann-Pick type C disease. Similarly, Lewis became involved in muscular dystrophy research after children he knew developed the disease. As the New York Times reported, Lewis frequently took a personal interest in the children with muscular dystrophy (often called 'Jerry's kids'), whom he featured during the Labor Day telethons.

Although their approaches were different, Lewis and Parseghian demonstrated a tireless, selfless dedication to comfort the afflicted and used fame to raise research and treatment funds for diseases that are less prevalent than cancer, heart disease, and stroke.

Meanwhile, NLM's Genetics Home Reference website explains Niemann-Pick type C is a rare disease that surfaces in childhood. Genetics Home Reference explains kids with Niemann-Pick type C have difficulty coordinating movement, an inability to move their eyes vertically, poor muscle tone, severe liver disease, and difficulty swallowing.

Genetics Home Reference notes there are two other types of Niemann-Pick disease, which is caused by a dual mutation in a gene. Genetics Home Reference notes parents of kids with Niemann-Pick disease carry one copy of the mutated gene, but do not show signs and symptoms of the condition.

MedlinePlus.gov's rare diseases health topic page explains diseases are called 'rare' when they impact fewer than 200,000 Americans. Niemann-Pick disease impacts about one in 150,000 Americans.

MedlinePlus.gov also has a health topic page devoted to muscular dystrophy, which represents more than 30 inherited conditions.

MedlinePlus.gov's muscular dystrophy and rare diseases health topic pages provide links to the latest pertinent journal research articles, which are available in the 'journal articles' section. Clinical trials that may be occurring in your area can be found in the 'clinical trials' section. You can sign up to receive updates about muscular dystrophy and rare diseases as they become available on MedlinePlus.gov.

To find MedlinePlus.gov's muscular dystrophy health topic page, please type 'muscular dystrophy' in the search box on MedlinePlus.gov's home page, then, click on 'muscular dystrophy (National Library of Medicine).'

To find MedlinePlus.gov's rare diseases health topic page, please type 'rare diseases' in the search box on MedlinePlus.gov's home page, then, click on 'rare diseases (National Library of Medicine).'

Albeit with contrasting approaches, it seems important to add that Lewis and Parseghian's fund raising efforts ended up equaling or eclipsing the careers that made each a public figure. It seems fitting that both are remembered for their good deeds as much as their respective comedy and coaching success.

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A disclaimer —the information presented in this program should not replace the medical advice of your physician. You should not use this information to diagnose or treat any disease without first consulting with your physician or other health care provider.

It was nice to be with you. Please join us here next week and here's to your health!