I know, I know. No one likes a blog post that starts off … Sorry for being MIA lately, but. And here it is. There are plenty of excuses of where I’ve been, what the family has been up to, etc. But what it comes down for me personally, is that work has been insane and I’ve been missing out on my PD family.
Little Ben, 6, goes to bed every night praying that “daddy’s Parkinson’s” go away. He doesn’t know what that means really. Nor does he understand that his dad is playing an active role in the cure. Continue reading Where have we been?→
Every time I interview someone for the Michael J. Fox Foundation blog, I find myself surprised that each time I’m talking to someone who is so passionate about life and the cause. I think I could say on behalf of my whole family that being involved in research, fundraising and the amazing Parkinson’s community is a daily blessing.
It’s something that really hit home for me in a recent interview with Kim and Libbe Erickson. Kim was diagnosed with Parkinson’s in 2010, and once he signed up for Fox Trial Finder and participated in a trial, he and his wife were approached by the Parkinson’s Disease Foundation to be Parkinson’s Advocates in Research (PAIR). They’ve been in seven trials since then and go to groups and events to spread the word about trials and research.
During the interview Libbe told me something that rang so true.
“We feel like being involved in research or promoting research… it’s like being able to harvest 10% of the placebo effect. It really can add some measure in your life. We don’t feel as much as a victim, i don’t feel like it changes your life as negatively as it could.”
Over the last few days, the news media has run a number of stories about peanut butter, smell and Alzheimer’s. Apparently a graduate student at the University of Florida conducted a pilot study, albeit small, to test Alzheimer patients’ and control volunteers’ ability to smell peanut butter. The results showed that the Alzheimer’s patients had a significantly decreased ability to smell in their left nostril, as compared with their right nostril, and compared to controls. This was a control blind study, results of which have been published in the Journal of the Neurological Sciences.
Made the connection yet. As you know, a large percentage of Parkinson’s patients have lost their sense of smell. Many of them prior to diagnosis. Actually, there is a smell test trial spearheaded by the Michael J Fox Foundation to determine whether a loss of smell may be a pre symptom cohort in PD and a smell may be helpful in early diagnosis for PD. By the way, have you signed up for this free pass to do good? It’s only two questions and easy to complete!
Coincidentally, that the two leading neurodegenerative diseases may have the same pre-symptom indicator. Now I am not a scientist, but I was not surprised by the finding. In the readings that I do to keep my finger on the pulse of research, one thing seems to be a common topic. Misfolded proteins. Alpha-synuclein protein in Parkinson’s and tau protein, among many, in Alzheimer’s.
Now this seems exciting to me. Why? My simple brain says “Unite”, “Share”. It is simple. All we have to do is share data between the scientists studying these two diseases. The model is there in the Fox Foundation. This is not about big pharma making money or some PhD getting famous or rich, it about finding a cure for both of these diseases, now.
Kathy was great and really enthusiastic to talk about Fox Trial Finder. And her story was fascinating.
Kathy’s grandmother had Parkinson’s, and died right around the time that drugs like Levadopa were coming out to treat symptoms. Through her grandmother, she said her “childhood memories are very clear of seeing the progression and expression of the disease.” That motivated her to use her background in event planning to join the Foundation years ago. Then, her research division was only six people. Now it’s nearly 25 strong.
Writing for the Michael J Fox Foundation has been a real learning experience for me. I mean that in a good way. It challenges all the things I’ve learned, and makes me feel like I’m not as sure in my footing.
It also makes me challenge the way I think.
As a reporter, I’m used to doing things the same way. I have no agenda (I swear!) as I interview people and tell a story. Writing for the Foundation, I’m trying to promote it. I’m trying to get people to care. I want them to read a story — like Roy Roden’s. I want them to believe like he believes, that we can be bigger and better than ourselves. And joining Fox Trial Finder is a way to do that.
I want them to read about Deb Faculak and see just how easy a trial could be. When her daughter sent her a link about Fox Trial Finder, all she had to do was log on and fill out a profile about herself. From there, she found a trial that suited her, and got to take a placebo in a dyskensia trial she really believes was the real deal. Now she just has to wait for the trial to be over to see if she can take the the drug.
But Deb’s point was that trials can be as easy as you want them to be. She did one where she had to keep a diary and travel back and forth to a doctor’s office for tests. She’s also done 23andMe, which is just a cheek swab.
During the course of the interview, Deb said to me: “The only way a drug is going to get on the market is if people are willing to take the time and be a guinea pig.”
Now, I loved the quote. I made it bold in the story, and I made it the headline. I didn’t think twice about it.
But Liz Joyce, who reads my stuff at the Foundation raised a flag that I would have never thought of. The word guinea pig.
It’s so interesting to me because I would have never thought about it. But I have to think like a person who might be on the fence about trials. It’s my job to try and get them to join the fight by telling them stories of other brave people. And if they’re worried about trials and what they entail, hearing the word guinea pig might scare them away.
In the end, I abbreviated the quote to : “The only way a drug is going to get on the market is if people are willing to take the time (and participate in a trial).”
Liz is also really good at taking what I write and adding in the lingo about Trial Finder and how easy the process is. It’s something I’m trying to learn to do on my own, but it still feels foreign to me sometimes. I’m not used to writing to get people to join in on something that might scare them. Nor am I used to writing to promote.
It’s a really fun experience that’s using what I am good at (or at least think I am good at) while pushing me out of my comfort zone. In the end, we all have the same goal: a cure for Parkinson’s. So I can feel a little uncomfortable as I navigate these new waters for now.
During my journey, I have had a lot of contact from many great organizations who are working to support the Parkinson’s community. Regardless of what they do, they all want the same thing, money. I get it- they need dollars to fund their good work. How are supposed to choose how to allocate our donations and efforts? I saw what I thought was a unique approach in a blog post that Kate wrote, she highlighted the efforts to raise money and awareness of Roy and Lynn Roden. In looking at their fundraising website, I saw something unique. In the donate portion there were a number of options. Apparently, these were the entities that they wanted to support. What a great concept. While it may now work for all of us in our fundraising efforts, it leads me to my next point and the real area of concern that I have.
There are a lot of separate efforts in finding cures, drugs for treating symptoms, and drugs for treating symptoms of the drugs we take for symptoms. I can’t tell you how many times I see advances in research that are published multiple times, by multiple parties. It is not because multiple researchers on a single team are publishing in multiple publications. It is because multiple efforts are attacking the same issue, or drug without collaboration. The Michael J Fox Foundation (MJFF) shares results of research they fund as part of their business plan. As I was finishing up the first draft of this post Todd Sherer, CEO of MJFF, published a piece in Forbes outlining the organizations efforts to collaboration. I don’t know if other “players in the field” do the same. I understand research leads to results, but it also leads to notoriety for the researchers and big money to whoever they work for. I really do get it, but the clock is ticking.
We also must do something to move collaboration forward. I don’t have the answer. Maybe Roy has the right idea. I know whenever I speak with various organizations in the PD field, I always bring up, “working together” and “make the effort to be inclusive of your dollar competitors, where ever possible.”
Join me in trying to find the solution. The MJFF shouldn’t have to do this alone. We are the answer. While all these great organizations are the vehicles to our destination, we are the drivers. Please share any ideas you may have.
For 25 years, Roy got diagnosis after diagnosis, surgeries, and nothing worked. Nothing happened. The tremor remained. Five years ago, at the age of 50, doctors got it right: Parkinson’s. In that moment, Roy found relief. “I was so frustrated for so long without knowing what was wrong,” he said. But now he had a name. “Immediately I wanted to know what I could do. I wanted to have fun with it.”
Since then, life has taken a drastic turn. Roy laughs when he says he used to have it all: the Porsche, the penthouse, and Harley. And he sold it all and went on a ride with Parkinson’s. Continue reading Meet Roy and Lynn Roden→
I am really really excited about the following announcement, and I’d like to share it with you.
As of today, I will be guest blogging for the Michael J Fox Foundation! Wait, what?!
Ever since I’ve been an editor only, I’ve missing writing daily. I have a journal, but I’m bad about using it. Because to me, writing is about telling important stories and making a difference in your community, not just about expressing myself.
On top of that, I’m often nagged by the feeling that I should be doing more in the fight against Parkinson’s. It’s this weird, nagging feelings I have between events and fundraisers. It feels kind of like this: