Learn more about MSA and support our fundraiser

The word is slowly getting out about multiple system atrophy. This month, Larry Kellerman, who was the caregiver representative on the board of the Multiple System Atrophy Coalition, appeared on local TV in Peoria, Illinois, along with another former caregiver, Steve Klisaris. Both lost their wives to MSA.

The station, WMBD, doesn’t allow video embeds, but here is the link to watch.

Larry mentioned the current MSA Coalition fundraising drive. We are competing against other charities on Crowdrise for bonuses, so please help. My page, in memory of my dad. is here. The Holiday Charity Challenge runs through January 5.

Thanks in advance. Stay tuned for some more event news in 2017.


Vince Neil supporting MSA research on ‘Celebrity Apprentice’


From sadness comes hope.

Celebrity chef Kerry Simon succumbed to MSA five months ago, but he left behind a legacy of courage, achievement and a huge network of famous and not-so-famous friends. One of those famous friends is Vince Neil, lead singer of rock band Mötley Crüe.

Neil is one of 16 competitors on the new season of NBC’s “The Celebrity Apprentice,” now hosted by Arnold Schwarzenegger because former host Donald Trump seems to be busy with something else.

Each contestant chooses a charity to play for, and Neil picked the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, where Kerry Simon was treated. Specifically, Neil will support Simon’s Fight Multiple System Atrophy and the Lou Ruvo Center’s Keep Memory Alive charity.

The show is filming now, and I haven’t heard an air date, but if you happen to be in Los Angeles, you can support MSA research and Vince Neil’s effort to win the $250,000 “Celebrity Apprentice” first prize

Tuesday, stop by See’s Candies at 3431 S. La Cienega Blvd. in L.A. between 10 a.m. and 12:30 p.m. local time to donate to the effort and perhaps meet Vince Neil. Or e-mail Michael Politz and he will send you a donation form.

I’ll finally be meeting some of Kerry’s friends and associates (other than his brother Scott, who runs Chuck’s: A Kerry Simon Kitchen here in Chicago) in a couple of weeks when I go to Las Vegas on a business trip. I’m going in a day and a half early for this very reason.


Donations matched on Giving Tuesday

December 1 is Giving Tuesday.

Two organizations, the Blandford-Rees Foundation and the Patrick Costigan MSA Research Fund, are offering to match every donation made to the Multiple System Atrophy Coalition. Vicki Wilson, whose mother is fighting MSA, and her husband Matt in upstate New York just announced on Facebook that they would match $5,000 as well.

I’ve set up a fundraising page on Crowdrise at https://www.crowdrise.com/MultipleSystemAtroph…/…/neilversel. Nearly 100 others have done the same. You can share either link, or set up your own page to share with friends and family.

It of course will take a lot more money to develop treatments and ultimately find a cure for this terrible disease, but the MSA Coalition has made $422,000 in research grants this year.

If you aren’t able to donate, perhaps you can help on social media? The MSA Coalition just announced an awareness campaign called MSA Can’t Take. I tweeted Monday night and will do so again Tuesday. Share on Facebook, Twitter, Instagram and other platforms if you can.



An easy way to support the MSA Coalition

I’ve just installed the iGive button in my Web browser. It’s a quick way to support the Multiple System Atrophy Coalition when shopping online at nearly 1,700 online stores. It’s not a lot of money, but it seems easy.

The button plug-in works with the following browsers:

  • Internet Explorer 7.0 – 11.x
  • Firefox 3.0 – 40.x
  • Safari 4.x – 8.0.x
  • OS X 10.5 & 10.6
  • Chrome 9.0 – 44.x

There are also iPad and Android apps available through the respective app stores.

I’m going to share this post on the Make Your Mark: MSA Awareness Tour Facebook page. If I and two other supporters of the MSA Coalition make a purchase by November 21, we earn an additional $50 bonus.

Kerry Simon, 1955-2015

The multiple system atrophy community lost one of its greatest assets today, Las Vegas-based chef Kerry Simon, who bravely became the public face of the fight against MSA two years ago by going public with his illness. Kerry died early this morning in hospice care in Las Vegas at the age of 60.

As I said on Facebook two days ago when I learned Kerry had been moved to hospice, I never personally met Kerry Simon, though I did meet his brother, Scott, at our pre-tour kickoff in July 2014 at Chuck’s: A Kerry Simon Kitchen in Chicago and talked to some of his associates. Seeing all the tributes to Kerry in words and pictures online makes me recall my dad’s horrific, final days in 2012. It’s not fair to see someone waste away in agony from an evil disease like Multiple System Atrophy. May Kerry rest in peace, may his loved ones be comforted and and may we someday find a cure for MSA.

I am not aware yet of any memorial plans or any requests for donations, but Kerry and friends did set up an organization called Fight MSA. Myself, I always encourage support of the Multiple System Atrophy Coalition.



Cause of multiple system atrophy, Parkinson’s identified

This is potentially the biggest news about multiple system atrophy to date: Researchers in Belgium and France have identified a cause of this and other similar neurodegenerative diseases.

The shape of a protein called alpha-synuclein in the brain determines whether a person will develop MSA or Parkinson’s disease, according to a paper published online Wednesday in the scientific journal Nature.

Full access to the article is restricted to subscribers and the research community, but here is a press release from the University of Leuven in Belgium:

Single protein causes Parkinson’s disease and Multiple System Atrophy

Several neurodegenerative disorders are caused by aggregates of a single protein known as alpha-synuclein. In collaboration with CNRS and the University of Antwerp, KU Leuven neurobiologists have discovered that the shape of these aggregates – ‘cylinders’ or ‘ribbons’ – determines whether a patient develops Parkinson’s disease or Multiple System Atrophy, respectively.

Typical of neurodegenerative disorders is the disrupted communication between brain cells together with a loss of cells in specific brain regions. For some brain diseases this phenomenon is linked to a protein known as alpha-synuclein. The exact function of this protein remains unclear, but it may play a role in the communication between brain cells. However, in the case of specific diseases, including Parkinson’s disease, Multiple System Atrophy (MSA), and dementia with Lewy bodies (DLB), this protein forms aggregates that cause neurodegeneration.

“When alpha-synuclein aggregates accumulate within a brain cell, they interfere with the normal functioning of the cell. The protein aggregates disrupt the communication between brain cells, resulting in cell death. Up to now, nobody understood how aggregates of this single protein could induce different pathologies,” says Professor Veerle Baekelandt from the Research Group for Neurobiology and Gene Therapy.

“You could compare it to the construction of a house,” doctoral researcher Wouter Peelaerts explains. “With the same building blocks – in this case the alpha-synuclein protein – you can create many different structures. In 2013, Professor Ronald Melki and his colleagues from CNRS isolated several forms of fibres called ‘strains’. The two most important strains were cylinder-shaped fibres reminiscent of spaghetti and broad ribbons that resemble linguini. We injected these fibres separately into the brain and blood stream of rats. We noticed that the rats developed different symptoms: while the ‘cylinders’ induced Parkinson’s disease, the ‘ribbons’ caused MSA symptoms.” This clearly demonstrates that distinct diseases result from alpha-synuclein fibres that are structurally different.

“We are gaining more insight into the differences between the diseases. But we suspect that more fibres with different shapes and effects are waiting to be discovered, apart from the two that we examined in this study. In any case, our findings open up possibilities for the development of new treatments. A drug that counteracts the development of aggregates could be used to treat a whole range of brain diseases.”

Next up: finding a treatment, then a cure.

MSA activist wins award

Multiple system atrophy is a rare disease, which makes it so important to educate others about it. One of the best at doing so is Pam Bower of Halifax, Nova Scotia, who lost her mother-in-law to the monster called MSA. If you are a member of any of a number of MSA-focused Facebook groups, you probably are familiar with Pam.

It has been a good week for Pam. First off, today is her her birthday. More importantly, though, she just received a nice honor, namely “Best In Show: Facebook” in the fourth annual WEGO Health Awards. Watch the short video announcement here.

WEGO Health is a network of more than 100,000 health activists who use social media to be “empowered” patients, caregivers and activists. If you want to know more about the e-patient movement, I’ve written plenty about it in my regular job as a healthcare journalist. Here are a couple of examples:

I encourage everyone with MSA or any other serious health condition to take a more active role in their own health and healthcare.