Tuesday, May 17, 2022

Special Olympics and Disability Advocate Eunice Kennedy Shriver dies

August 11, 2009 by  
Filed under Rare Disease

A big thank you to Eunice Kennedy Shriver for leaving millions of people and families dealing with disabilities of all types a lasting legacy. Maybe President Obama will make a nice comment about Mrs. Shriver today and all she did for the Special Olympics considering his horrible Jay Leno joke a few months back.

Washington Post article here.

Want to Avoid Alzheimer’s? Keep Cholesterol levels low a new Kaiser Permanente study reports

August 10, 2009 by  
Filed under Alzheimers


I have been saying this for close to two years now about cholesterol and dementia being linked but no one seems to listen.  Now a Kaiser Permanente study published in Dementia and Geriatric Cognitive Disorders has hits the news showing that what’s good for your heart is good for your brain.  Really?  I guess this is a surprise to the Alzheimer’s Association?

Maybe scientists studying heart disease and Alzheimer’s will read Brown and Goldstein’s recent paper in Cell about the Niemann Pick Type C gene on Chromosome 18.  I wonder if the Alzheimer’s Association even knows who Brown and Goldstein are?   In case they don’t know, Brown and Goldstein are considered the “cholesterol kings” and in 1985 they won the Nobel Prize for their discovery of the LDL cholesterol receptor.  The entire multi-billion dollar statin drug industry was build off of their cholesterol research — the same drugs people are being encouraged to take to possibly ward off Alzheimer’s.

Why are Brown and Goldstein studying a cholesterol gene we are all born with called Niemann Pick Type C located on Chromosome 18 and why are they publishing papers about it?  As it turns out, when this gene is severely disrupted as it is in my identical twin 5 year old identical twin girls, it causes a fatal cholesterol disorder and childhood dementia. This genetic disruption only affects 500 children in the world yet these children could hold the keys to cholesterol metabolism in the human body.

Brown and Goldstein’s Cell paper (pay particular attention to Figure 6!) is probably the most important NPC paper since the discovery of the Niemann Pick Type C gene by Dr. Peter Penchev and National Institues of Health over 12 years ago.  Many of the answers for cholesterol and dementia have been right in front of us for years — we only need to look deeper into cholesterol disruptions and genes like Niemann Pick Type C.  After all, it’s a gene every person is born with and it is involved in cholesterol metabolism and could impacts many pathways in the body.

Finally, meet Addi and Cassi’s and see their favorite products on our home page — many are mentioned in this article from plant sterols to red rice yeast.  Our battle against the killer cholesterol continues.  We hope you join our fight.

Here is the story:

(CNN – Aug. 5) — People as young as 40 with borderline or high cholesterol levels are at increased risk for developing Alzheimer’s disease or vascular dementia, said a Kaiser Permanente study released Tuesday.

Researchers tracked nearly 10,000 people for four decades, starting when the participants were between 40 and 45. After controlling for weight, hypertension and diabetes, researchers discovered a significant link between borderline-high cholesterol and dementia, according to the study.

Although previous studies have linked heart and brain health, researchers said this study is the first to examine the association between borderline cholesterol levels and dementia.

And although dementia does not typically strike until later in life, “it’s a disease of a lifetime,” said Rachel Whitmer, research scientist at Kaiser Permanente and senior author of the study. “We need to think about it like we do for cardiovascular disease.”

The study found that participants who had high cholesterol, or a value of 240 or more, had a 66 percent greater risk of developing Alzheimer’s disease later in life. People with borderline-high cholesterol, between 200 and 239, had a 25 percent spike in risk.

“The terminology can really be confusing to people who don’t necessarily associate borderline elevations with substantial increased risks,” said Dr. Gregg Fonarow, a cardiologist and professor of medicine with the UCLA Division of Cardiology.

More than 106 million Americans have borderline-high cholesterol levels, according to the American Heart Association.

“If anyone was ever on the fence about controlling their lipid profiles, this could be further reason to bring your numbers to an optimal level,” Fonarow said.

The first step to lowering high cholesterol is to modify a person’s health habits.

“When I meet with patients, I emphasize to them that there’s not one single thing they can do to improve their lipids. They have to think of their whole life,” said Dr. Larry Bergstrom, director of the Integrative Medicine Program at the Mayo Clinic in Scottsdale, Arizona.

Experts agree that a three-pronged approach of daily exercise, stress reduction and nutrition can naturally lower levels. A diet rich in olive oil, nuts, whole grains, fiber, fresh fruit, vegetables and a limited amount of red meat is best, according to the Mayo Clinic.

“These people were between 40 and 45 years old when their cholesterol was measured. That is many years before one would get dementia. This is a modifiable risk factor that can be changed,” Whitmer said.

Supplements such as plant sterols and red yeast rice are also effective when taken in conjunction with a healthy diet. A recent study showed that red yeast rice decreased the body’s production of cholesterol and lowered a person’s LDL, or bad, cholesterol by 27 percent over a three-month period.
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“If someone changes their diet, exercises and works on stress, supplements could be what pushes them over the edge and helps complete the picture and lower their levels effectively,” Bergstrom said.

More traditional treatments such as prescription medications are also an option for those people who eat a heart-healthy diet and exercise daily, but still need help lowering their overall cholesterol. “If every individual knows their optimal lipid levels and can control them, it will pay large health dividends,” Fonarow said.

Although the Kaiser study does not show proof that lowering cholesterol definitively lowers the risk for Alzheimer’s disease as well, many doctors agree that nothing adverse can come of reducing high cholesterol levels.

“What’s good for your heart is good for your brain,” Whitmer said. “That really captures all the timely messages about dementia science.”

CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease

August 5, 2009 by  
Filed under Health Care Policy, Videos

Here is a story on sweet little Jessica Leoni who suffers from the same disease as Addi and Cassi. Her health care is being threatened by California’s Health Care crisis. Here is the story from CNN.

LOS ANGELES, California (CNN) — Anthony and Lisa Leoni have little time to worry about whether California’s budget crisis will affect their daughter’s life-sustaining care.

A steady stream of nurses, caregivers and therapists visit 12-year-old Jessica at home around the clock. Jessica suffers from a rare and fatal disease called Niemann Pick Type C. A cholesterol imbalance destroys healthy cells in the liver, spleen and brain.

Although Jessica led a relatively normal life before the illness worsened, her mother always knew the disease would eventually take over.

“Jessica was playful, happy and loves people. My heart was always a flutter because you never knew how many moments you’d get,” Lisa Leoni says.

In Jessica’s case, a grand mal seizure suffered Memorial Day weekend 2005 brought a world of hurt to the Leonis.

At the height of her symptoms, Jessica suffered up to 60 seizures a day. The disease, also known as NPC, has stolen her ability to walk, talk, eat or even breathe on her own. An oxygen machine pumps air into her lungs around the clock.

Anthony Leoni knew they needed help.

“If you told us 10 years ago this is how your life is going to be, I would have said we’re not capable. We don’t have the training, ability, we don’t have the energy, we don’t have the stamina.”

They found Bill Feeman of Westside Regional Center.

“When you walk into this home and you see Jessica, [you] just fall in love with her,” Feeman says. “She is a sweet soul — you see her, she’s physically helpless, yet there’s a light that shines out of her eyes, it takes you in.

“When you meet this family and you see how hard-working and involved they are, you just wanna do everything you can to help.”

Feeman worked to find in-home support in the form of nurse caregivers, therapists and medical supplies.

“This family also has all the normal responsibilities of raising a family. They have to pay their mortgage, they have to feed their family, they have to go to work. So when you have someone as medically involved as Jessica is, and you’re talking about all that worriment and responsibility of your child being ill and on top of that you still have to … bring home a paycheck every week in order to pay your bills, you need a lot of help.

“You have to be awake at night with Jessica. She cannot be left alone for even five minutes where someone is not awake and attentive to her needs. So you’re looking at a family, who when I first met them a year ago had some help in the home but nowhere near enough and they were exhausted. They were trying to be caregivers, nurses, doctors, and then get up and go to work during the day and still support their family.”

“We pieced all these programs together. We finally got everything in place where they can be parents again, which is a wonderful thing. And that’s what scares me about these budget cuts … it scares me a little bit that things might start moving backwards.”

One of those caregivers is Carmen Bailey, a certified nurse assistant and home health aide with Caring Connection. She has been working with Jessica for more than two years.

“It’s been an experience. I call her my angel. I bathe her, groom her, position her, massage her to make her comfortable.”

Carmen may be affected by the budget cuts.

“I also have to live to keep on going. I know I will still be here and whatever I need to do extra I’m willing to do it for the family and Jessica.”

Westside Regional Center is one of 21 state regional centers providing services literally from birth to death.

They work with people diagnosed as developmentally disabled, including those with cerebral palsy, epilepsy, autism and mental retardation.

Mike Danneker is executive director of Westside Regional Center.

“Our budget is in the 4 billion dollar range for about 240,000 clients in California,” Danneker says. “Westside gets about 140 million dollars a year and we have about 7200 clients.”

He believes the California budget fix will cut a half-billion dollars statewide from their budget.

“It’s going to affect everybody. Camps, therapies like art, horseback riding, some of the things people have done for decades will be gone. We’ll have to cut back the number of hours to about 300 hours a year. We estimate 40 percent of California clients have over 300 hours a year.”

Anthony Leoni has this to say about impending cuts to Jessica’s life-sustaining care.

“It’s absolutely frightening to think about what happens if the services go away. They’re absolutely essential to keep Jessica going.”

Jessica’s childhood friend Kristina Carmickle stands by her bedside.

“We did a lot of tap (dance) together, that was Jessie’s favorite. Once you have a friendship that’s big enough, you’re always wishing for the best.”

Anthony Leoni sums it up this way: “We know that there are other families that have challenges similar to us, sometimes even more dramatic than ours, and if we can serve a purpose or a role to help bring the awareness to public what it takes to take care of a family like ours, then we’re willing to make that effort.”

What Dying Kids Can Teach Our Government About Health Care Reform

August 4, 2009 by  
Filed under Videos

Addi & Cassi Story II from Addi & Cassi Hempel on Vimeo.

Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease like Niemann-Pick Type C (NPC). This video was made when our twins Addi and Cassi could still talk and sing — they have lost this ability due to “Childhood Alzheimer’s.” I hope everyone in government will watch this video and look at our website to understand why the entire health care process is broken, especially drug development. Would someone please forward my video and website to Nancy Pelosi, Harry Reid, Arlen Specter, Kathleen Sebelius, President Barak Obama and others.

Rare diseases that afflict children like the cholesterol disease Niemann Pick Type C could lead to treatments and cures for millions of people. When will anyone pay attention? Maybe this year Oprah will consider covering Addi and Cassi since the cyclodextrin we are giving Addi and Cassi not only might save them from this deadly cholesterol disease but all kills the HIV-AIDS virus!!

Old Blue Eyes Returns To Reno – Frank Sinatra Stylist Singer Paul Salos To Perform To Find Cure For Childhood Alzheimer’s

August 4, 2009 by  
Filed under Fundraisers

Paul Sales Vegas

Paul Salos, a Frank Sinatra stylist singer who made it through as a Top 10 contestant America’s Got Talent during the fall 2008 season will perform on October 3, 2009, at the Grand Sierra Resort in Reno, Nevada. Salos, who has been working as Frank Sinatra stylist for approximately 40 years, will join Nevada Entertainer of the Year and ICONMAN musical impressionist Greg London along with 5-year old singing sensation Kaitlyn Maher.

The three outstanding vocal entertainers will perform at a fundrasing event to support The Addi and Cassi Hempel Fund and together will bring a voice to children who have lost theirs from a  fatal illness called Niemann Pick Type C, or “Childhood Alzheimer’s.”  Salos’ natural vocal impression of Frank Sinatra has won the hearts of America and his appearance at “An Evening of Stars” will surely be a highlight.

Here’s what the blogs have to say about Salos:

Old Blue Eyes is back!
Wow, this guy sounds exactly like Frank Sinatra!
He has an absolutely brilliant stage presence and the late Sinatra himself is handling his applause from above I’m sure!
What a smile to go along with the voice

Tickets for the event are on sale now.