by Rick Davis | Sep 28, 2021 | Advocacy, Brain Tumors, Cancer Caregivers, Cancer Resources, Exercise, Health Resources, mCRPC, Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News
Check out the CDMRP ….. it may be for you!
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.
by Rick Davis | Aug 31, 2021 | Advocacy, AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
Wanna make an AnCan Rude Names Fundraiser???
Here’s our latest proposal for AnCan supporters to raise a few bucks on our behalf ……. follow Brit Paul Taylor’s lead and raise money for us with a US Version Rude Names fundraiser . And to heck with a moped … we have a few bigger bikes in this Group.
Watch Taylor’s UK Tour in this short BBC video https://www.bbc.com/news/uk-england-oxfordshire-58375401 and see a few of the places he visited below!
Maybe you just have to be a Brit to appreciate this toilet humor …. but if not, AnCan is all ears!
by Alexa Jett | Jun 9, 2021 | Advocacy, AYA, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, RMC, Thyroid Cancer
Are you an AYA (Adolescent/Young Adult) cancer patient, survivor, or caregiver ages 15-39?
I have a great event to tell you about. Digital Cancer Con presented by Stupid Cancer is the place to be this weekend!
COMPLETELY FREE, you’ll find fun activities (trivia, dance party, scavenger hunts, prizes), meet new friends, and hear from top experts about topics relevant to you. Fertility, dating, mental health, and so much more.
You’ll also see AnCan’s own Wendy Garvin Mayo at the Practical Resources for Caregivers session on Sunday, and Alexa Jett (me) will be out and about representing any and everything AnCan. Don’t forget to say hi!
Register for this amazing event, here.
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
by Alexa Jett | May 6, 2021 | Advocacy, AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Maui, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
Have you checked out our page “All the Faces of AnCan” lately? We are always growing, and you might see some new faces! While we’ve discussed Dr. Herbert Geller (researcher and AnCan Advisory Board Member) previously on the blog, we have a special treat today. Dr. Geller was part of an esteemed panel explaining the science behind mRNA Covid-19 vaccines with CureTalks.
I find this description of what mRNA means and brief explanation from CureTalks to be extremely helpful.
Messenger RNA vaccines, also called mRNA vaccines, are some of the first COVID-19 vaccines authorized for use in the United States. mRNA vaccines are a new type of vaccine to protect against infectious diseases. They teach the cells of our body to make a protein that triggers an immune response. This immune response leads to the production of antibodies which protects us from getting infected if the real virus enters our body.
Be sure to check out this informative presentation, here!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
by Rick Davis | Apr 25, 2021 | AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Thyroid Cancer, Women's Breast Cancer
If Medicine Doesn’t Come to you, Go to the Medicine!
You know what they say about Mohammed and the Mountain …… if the mountain will not go to Mohammed, Mohammed must go to the mountain! Well it’s often like that today with cutting edge medicine – and even not so cutting edge if you live in out of the way places like Maui, HI where our Board President, Peter Kafka, resides. It’s all part of Being Your Own Best Advocate…… (rd) PS Peter has asked me to clarify, he wrote what follows – not me. But I guess most of you can figure that out!
Back in 2014 when I was first diagnosed with advanced prostate cancer, my younger son who was 38 years old at the time was in the urologist’s office with me getting the news. As I was seated on the exam table, he was standing in the corner leafing through the booklets and pamphlets about prostate cancer while we waited for the doctor to deliver the bad news. My son, holding up a booklet exclaimed to me; “Dad, this literature is older than me!” Right away we both knew we were in the WRONG place.
Unfortunately, so many men and women reside or walk into the “wrong” place when it comes to getting access to the most up to date technology in terms of treatment or diagnostic tools. Little did I know back then. I lived at that time under the illusion that the “Doctor” knew everything and would of course be up to date with the latest and greatest. Not so, as I quickly learned.
One of the great values that I have found in participating regularly in our AnCan prostate cancer support groups is the experiential reporting on all the new cutting-edge treatments and diagnostic tools that are emerging and available. Recently one of our number took advantage of the new technology of Micro Ultrasound to guide a biopsy. Apparently, this is found to be even better than the 3T multi-parametric MRI in determining just where to poke the needle and take a tissue sample, leading to a far more accurate diagnosis. It can detect small, but significant lesions within the prostate that might otherwise be missed.
The rub however, like any new advancement is that not every facility or doctor will be in the “know” or have access to such tools or treatments. Don’t I know this well, living here on the Island of Maui in the middle of the Pacific Ocean. The lesson for all of us is that we should carry a business card stating; “Have Suspicion Will Travel”. Please don’t wait for technology to come to your doorstep or for enlightenment to come to your doctor. Your life is way too important to me.
by Rick Davis | Mar 29, 2021 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Thyroid Cancer
Jackie Zimmerman, AnCan’s resident graphics guru/web designer and a Member of our Advisory Board, is a long time patient advocate for multiple conditions. She’s seen seen a lot in her 15 years ….. that just bests me by a year or so!
Now Jackie has written a very perceptive and insightful Blog Post on her website that is definitely worth a read if you consider yourself a Patient Advocate … and frankly even if you don’t!
I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think.
Click here to read the full article!
Onward & upwards, rd
