We love Jennifer Digmann! She makes up one half of our lead MS moderators with her husband Dan. Here she shares what it was like being diagnosed with MS as a young adult, and talks about MS Rockstar Dr. Aaron Boster, who you may have seen around here at AnCan.
It was my senior year in college, and crazy things were happening with me. No, I don’t mean bar crawls or sorority parties, I’m remembering numbness in my hands and feet and incredible fatigue. While I probably was burning myself out studying, working and socializing, I never saw being diagnosed with multiple sclerosis in my future. But six months after graduation, I was diagnosed with that chronic, progressive disease of the central nervous system.
Hmm, MS? At 23 years old, I had other plans for my future, but the disease didn’t care. Its progression was relentless. There were three available disease modifying medications at the time—DMTs intended to slow the progression and severity of the disease—and I had no success with any of them. Time and my walking ability was going by so quickly. What was I going to do?
Fortunately at that time, I started hearing about a newly approved medication to treat more progressive forms of multiple sclerosis. Unfortunately, my neurologist at the time did not feel comfortable prescribing me this drug. Again, what was I going to do?
I was scared and frustrated, yet I knew something drastic had to happen to slow the progression of my disease. Even if that meant finding a new doctor who felt comfortable and was willing to prescribe this newly approved medication to me.
With my first neurologist’s blessing and referral, I began my more aggressive treatment at the University of Michigan neurology clinic. I was fortunate to find a team of fantastic doctors to treat my case. They prescribed a vibrant, electric blue infusion solution called Novantrone. While my MS did not drastically improve, it stabilized, and stability has been incredibly important to me. I am so thankful and credit those doctors with altering the course of my disease.
Full transparency, I am particularly fond and appreciative to the engaging young resident who was on my care team close to fifteen years ago. In those years after my Novantrone treatments, so much has happened in my life. My multiple sclerosis has stayed pretty stable, I was able to earn my graduate degree, and most importantly, I married the man of my dreams.
And not surprisingly, so much has happened in the life of that engaging young resident, too. Since his time at the U of M, Dr. Aaron Boster has become, well, Dr. Aaron Boster. He is a champion and a powerhouse for the multiple sclerosis community.
While Dr. Boster is no longer treating me, Dan and I still find value in the accessible, informative content he shares with the MS community. Dan and I were thrilled that he recently had a very thoughtful conversation with us which provided answers to our “7 Questions with a Couple” blog series.
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
On July 22nd, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) lead our appropriately titled…”Art With Hannah Garrison“! It has a Saturday Night Live ring to it, don’t you think? She was requested to teach something relaxing and summer-y, and did she deliver!
We created an absolutely beautiful dusk beach setting, that is begging for a pineapple drink with a little umbrella in your hand. Last time we had an event to celebrate MS Awareness Month, but this time all were welcome. We saw members from our Blood Cancers, Prostate Cancer, Thyroid Cancer, MS Group, and more!
I promise this is SO easy and relaxing, so grab some supplies and have an hour of creative relaxation.
Supplies:
Acrylic paint or watercolor paint. (It will be watered down, so it doesn’t matter!) Colors – blue or aqua / dark blue / orange/ pink / purple. (colored pencils were also successfully used in this art project!)
Paint brush – round or flat.
Black crayon, but any dark color will be ok!
Water
Napkins
If you have any suggestions, or would like your art featured in the AnCan Art Gallery, please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
A real friend is one who walks in when the rest of the world walks out. – Walter Winchell
I really love this quote. Having cancer, serious, chronic, or rare illness is so isolating. Even if you have ample support from family and friends, nobody knows your situation like a peer does. It’s beyond comforting to join my thyroid cancer virtual support group and instead of explaining a symptom / side effect, I can just share what is going on, with reassuring nods, and validating comments.
At AnCan, support is personal. Our support group moderators are incredible people who sign up to help fellow peers just like them. They are here to celebrate the good days, mourn the bad days, and even fellowship during the blah days in-between. It’s not surprising that our people even gain deep, meaningful friendships.
Rick and I received this breathtaking photograph of our MS support group moderators Dan and Jennifer Digmann and Kim Stroeh meeting up together in Iowa. This makes our hearts so happy, and is really what AnCan is all about. Never being alone, in whatever you are facing. Our MS group is such a great example of community.
Thanks, Dan, Jennifer, and Kim for the smile today.
Here’s to friendships, and support wherever you are!
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On April 28th, we had the pleasure of having Elizabeth McLachlan!
Elizabeth shared excerpts of how she uses creative pursuits like tap dancing and singing to express herself, undeterred by the challenges that multiple sclerosis (MS) has brought into her life. MS is a debilitating disease that attacks the brain and central nervous system.
Afterwards, Rick Davis and Elizabeth discussed how important creative expression is. We’re certain you’ll fall in love with Elizabeth too.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
