Patricia Richardson A Rare Acting Talent Helps Battle Rare Disorders

Patricia Richardson

The National Organization for Rare Disorders (NORD) has a motto that says, “Alone we are rare. Together we are strong.” The alone part refers to the fact that according to the Rare Disease Act of 2002, by definition a rare disease affects less than 200,000 people in the United States, which is around one in 1,500 people. There are nearly 7,000 such diseases affecting nearly 30 million Americans, says the National Institutes of Health (NIH).

The roots of the act actually took place in 1983 with the Orphan Drug Act, a federal law written and passed to boost research into possible cures for rare diseases. According to NORD, in the decade before this act there were only 10 new treatments brought to market by industry for diseases that today are defined as rare.

This is where the together part of the NORD motto comes in. By forming an organization to bring attention to all rare diseases under one umbrella, NORD is able to raise national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society. Their goal is to create a nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve lives.

When it comes to recognition, one of the best ways for an organization to raise its profile is to partner with a celebrity who can speak to their cause. Enter: Patricia Richardson.

Patricia Richardson
and her father before
his death in 2005.

You most likely know Richardson from her starring roles on Home Improvement with Tim Allen, Strong Medicine, and The West Wing. What you may not know is that in 2005 she lost her father to progressive supranuclear palsy (PSP), a rare neurodegenerative brain disease with no known cause, treatment, or cure.

“When my dad first started showing signs of PSP we thought he was just being a pain,” Richardson says. “We thought he had osteoarthritis. He had a difficult personality sometimes, but when he had open heart surgery, it accelerated the disease. That was when we noticed that he really stopped talking. People don’t understand that PSP attacks the brain cells that control speech and swallowing.”

Richardson says that it must have been so hard for her father to understand what was going on. Since you never know which brain cells are being overcome by the disease, emotional skills, motor skills, and everything in between can be affected. Richardson’s father’s face was essentially frozen, and at the end of his life she says it was like he was mummified and trapped inside his body.

“We would have to use hand signals or thumbs up or thumbs down signals to communicate with him,” she says. “When you go through this with a loved one, it’s like you no longer have this person to talk to. It’s like they’re gone but not really gone, so when they pass away, it’s not much different. I wondered if I’d be relieved when he passed away because he wasn’t in a terrible place anymore, but it was very painful when he died. It’s a parent and they’re suddenly off the planet.”

Shedding Some Light

Back in 2005, Richardson says that they didn’t have a clue about how to handle PSP. There were support groups and physical therapists who could supposedly delay the symptoms, but that was all. As a way to cope with her own grief, Richardson became involved with a group called CurePSP to help raise money and awareness for the disease. After not even a decade into its founding, scientists have discovered that patients can be helped by adding certain supplements into their nutrition regimen.

“Our patients have been helped by massive doses of CoQ10,” Richardson says. “Personally, I take alpha lipoic acid, potassium with vitamin D, vitamin C, and DHEA because I’m an aging female.”

In addition to supplements, Richardson says that their research has uncovered the importance of the tau protein in the disease’s development.

“They’re really making great strides,” she says. “Neurologists and biogenetic scientists have been coming up with some interesting ideas. But it’s all about money. There are cutbacks at NIH and the costs that are associated with big pharmaceutical companies and developing a drug with the FDA make new drug development difficult.”

Joining With NORD

 

Richardson came across NORD through her experience with her father’s PSP case.

“I came to NORD because they helped PSP so much,” she says. “NORD really came in handy for us. And they come in handy for other people. I was hosting a dinner and came across a family who had a child who was truly one of the only people on earth with a certain disease. NORD connected the family with the one other family they knew about who was dealing with the disease and they got the doctors in touch. The doctors were able to collaborate and through connections find potential clinical trials for their patients.”

The key, says Richardson, is that NORD combines over 200 advocacy groups for around 7,000 rare diseases. Those are essentially all the diseases that nobody has heard of, making NORD a catch-all support group.

“Having a disease that nobody else has is such a lonely place,” she says. “Or when you’re the caregiver and a loved one is battling a disease that is rare, people kind of just look at you. They don’t want to hear about this thing that could possibly happen to them that they’ve never even heard of.”

One of NORD’s main ideas is that there are rare diseases, but the experiences of the afflicted and their families aren’t rare.

“We’re a big lobbying group,” Richardson says. “We can get all these people to lobby Washington for more money to be allocated to helping to find cures. It’s like the motto says. Alone we are rare. Together we’re strong.”

For more information on NORD, please visit: www.rarediseases.org.

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