Category Archives: Fox trial finder

Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom

Where have we been?

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.

Let me catch you up with what’s been happening.

Meet the Vanek family: Emily, Sherri, Ben and Michael
Meet the Vanek family: Emily, Sherri, Ben and Michael

Recently, I had the honor of interview the Vanek family for the Michael J Fox Foundation’s blog. The dad, Michael, has PD and is participating in every trial he can. It was seriously one of my favorite, if not my absolute favorite story I’ve written for the blog. Why? Honestly, I’m not sure. But I think it has to do with the innocence of the children in the 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?

More Parkinson’s work to be done

Libbe and Kim Erickson at the 2013 World Parkinson's Congress.
Libbe and Kim Erickson at the 2013 World Parkinson’s Congress.

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.”

Continue reading More Parkinson’s work to be done

Contributing to the goal of a cure

My most recent interview for the Michael J. Fox Foundation blog was Foundation staffer Kathy Vestuto.

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.

But that’s not all Kathy does.

Continue reading Contributing to the goal of a cure