Tuesday, July 5, 2022

Rare Disease Idea Leads ‘Ideas For Change In America’ Competition by Change.org

March 3, 2010 by  
Filed under Health Care Policy

Ideas for Change in America is a competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.

From January – February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from each issue category qualified for the final round.

Right now, 25 Million+, It is time to care about rare disease is rated as the #1 overall topic! Let’s help it stay at the top.  Vote here!

The 10 most popular ideas will be presented to relevant members of the Obama Administration, and Change.org will subsequently mobilize its full community to support a series of grassroots campaigns to help turn each idea into reality.

Please take a few minutes and cast your vote on behalf of the 30 million Americans affected by rare disease — that’s 1 in 10 people in the US living with a chronic or life threatening rare disease!   It’s time to care about rare!

I am Green Beans and Ensure!

March 3, 2010 by  
Filed under NPC Family Stories

I am laughter until my belly hurts. I am strong, plus I have muscles. I am Illinois and Iowa. I am a brother with many parents. I am a sports fan. I am dogs and cats, horses and cows fan. I am green beans and Ensure. I am Happy Joe’s on a Friday night. I am one/fifth of a tribe. I am a guiding light. I am a force to be reckoned with. I am finding my place. I am independent. I am a handholder. I am OT. I am PT. I am one hospital stay away from owning my own wing. I am evolving, becoming. I am Niemann-Pick Type C.

Tylor Richardson is a teenager suffering from Niemann-Pick Type C (NPC) disease, a fatal and relentlessly progressive neurological condition that results from the inability to process cholesterol at the cellular level.

There are approximately 500 children in the world living with this rare disease that causes dementia yet research into the NPC cholesterol gene could lead to discoveries that could help millions.

Obama Cracks Jokes About Cholesterol Level And Personal Health – Is He Out of Touch?

March 2, 2010 by  
Filed under Featured Stories

I almost had a heart attack today (no pun intended) when I read that President Obama was joking about his cholesterol.  “I don’t want any lectures about my cholesterol,” he said, according to the pool report.

If President Obama needs inspiration to cut his cholesterol and push away that fried chicken the next time he sits down for a meal, he might want to read about my six year old identical twins and their cholesterol problem. Cholesterol is killing them. And it’s no joke!

If President Obama was to meet my twins he might ask them why he should pay attention to his cholesterol and how cholesterol impacts their health.  Too bad cholesterol has destroyed their ability to talk and their memories too. My children suffer from one of the worst genetic cholesterol diseases on the planet – Niemann Pick Type C. Millions of other people are suffering from cholesterol related illnesses that kill – just ask former President Clinton or the people on statin drugs.

I think President Obama should call the American Heart Association and apologize.  We need people in the highest levels of our government taking their personal health seriously and using their time in the public eye to educate.  How can you expect a nation to change their eating habits when you’re stuffing fried chicken in your mouth and cracking jokes about your health?  The PR people should be fired as Obama should know exactly what he should say to the public about his cholesterol and meals for him should be ordered in advance.

One of the last jokes Obama cracked was on Jay Leno about the Special Olympics and I wrote a blog about this too. I’d like the President to understand why my kids are “special needs” — they are literally losing their minds as a result of this genetic cholesterol illness.  In fact, 22 million children in the US are estimated to suffer from chronic and life threatening rare diseases like Addi and Cassi which are causing a major crisis in our education and health care systems.

I spend my days trying to educate people about cholesterol. Cholesterol problems are mainly genetic in origin. Many roads are leading to the Niemann Pick Type C gene on Chromosome 18 as one of the major drivers of cholesterol in the human body.  The NPC gene regulates human cholesterol at the cellular level and we are all born with this gene.  This is why Nobel  Prize cholesterol scientists Drs. Brown and Goldstein are studying the gene and publishing papers about Niemann Pick.  Addi and Cassi were simply born with genetic defects on this cholesterol processing gene have a fatal and relentlessly progressive neurological condition as a result.

The Niemann Pick Type C gene is also thought to be a culprit in obesity. Last year, I posted a blog about the genetic link to obesity and the Niemann Pick Type C gene from a research group at Inserm in France.  Given the First Lady’s interest in helping solving obesity in America, she might want to read it.

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