AnCan, is proud to announce that two of its dedicated patient advocates have been named to the esteemed Cancer Health 25 list. This annual recognition by Cancer Health magazine salutes outstanding individuals who are making a profound difference in the lives of those affected by cancer.
The Cancer Health 25 list highlights the unwavering efforts of patient advocates who bridge critical gaps in cancer care, providing essential support, education, and resources. As the article states, “No one should face cancer alone. Luckily, a vast range of skilled and dedicated patient advocates can provide support to people with cancer and their loved ones.” The list acknowledges individuals who raise funds and awareness, build programs, share information, facilitate access to care, and much more, especially for vulnerable and underserved communities.
We are incredibly honored to see two of our own advocates recognized among such an inspiring group of individuals. This recognition underscores the vital role that patient advocates play in ensuring that no one walks their cancer journey alone. Our advocates tirelessly embody Dr. Harold P. Freeman’s vision of filling the ‘disconnect between what we discover and what we deliver’ in cancer care. We are immensely proud of their dedication and the profound impact they have every day.
Ritchie Johnson
Among those recognized is Ritchie Johnson, MBA, RN, founder of the Chris “CJ” Johnson Foundation and co-founder of AnCan’s Renal Medullary Carcinoma (RMC) virtual support group. Ritchie launched the Chris “CJ” Johnson Foundation in memory of her son, who died of RMC, a rare and aggressive type of kidney cancer primarily affecting young African Americans with sickle cell trait. A relentless advocate, Johnson has tirelessly pushed for increased RMC awareness, funding, and scientific attention, which has led to the formation of multiple clinical trials.
Howard Wolinsky
Also honored is Howard Wolinsky, a Pulitzer Prize–nominated medical journalist and a prominent advocate for active surveillance in prostate cancer. Diagnosed with low-risk prostate cancer at 63, he chose active surveillance over immediate treatment 15 years ago and has not yet required intervention. He passionately supports others navigating similar decisions, co-authoring dozens of articles in medical journals with physician-scientists. He is the editor of TheActiveSurveillor.com and is a co-founder of our Active Surveillance Prostate Cancer Group.
Our mission is rooted in the belief that shared experiences and peer support are fundamental to navigating a cancer diagnosis. The organization’s advocates work diligently to connect patients and caregivers, provide trusted information, and foster a strong, supportive community. Their inclusion in the Cancer Health 25 is a testament to their commitment and the effectiveness of AnCan’s patient-centric approach.
AnCan extends its deepest gratitude to Cancer Health for shining a light on the invaluable contributions of patient advocates and for recognizing the tireless efforts of its team members.
Tomorrow is the 10th Anniversary of my dear friend, Jerry Carniglia’s passing, God Rest His Soul.
I loved this man. I found him in 2011, when my buddy Eric Schmier GRHS/z”l asked me to navigate him. That’s the same Schmier after whom we named one of our Virtual Room when his family made a very generous donation early in AnCan’s history. Jerry had been diagnosed with denovo metastatic prostate cancer and was being treated inadequately at Kaiser Permanente in Oakland, CA.
Eric was a developer in Emeryville, Caifornia, and Jerry was the ‘unofficial’ Mayor. Everybody knew him – he lived in a disused 6,000 s.f. factory turned into his living space and studio. Jerry was a general contractor, artisan woodworker with an enormous, fully equipped workshop, an artist of very large (& small) canvasses, and not least an actor. Jerry’s closest buddy from drama school at UC Berkeley school was Tony award winner, Tony Taccone, Artisitic Director at Berkeley Rep. You may be familiar with Tony’s son and Jerry’s Godson, Jorma Taccone of Lonely Island and Saturday Night Live fame (Dick in the Box).
Jerry was diagnosed with denovo metastatic prostate cancer in 2011, and we transferred his care from KP to UCSF as soon as we could under the amazing, watchful eye of Dr. Larry Fong. Larry is the Principle Investigator for Provenge and a highly respected GU medical oncologist. Jer’s prognosis was not great and we got him around 4 years.
This picture was taken on Halloween 2012 on the occasion of Jerry receiving his 3rd Provenge infusion!
Amongst other pre-‘AnCan’ directed navigation, Jerry was the first Veteran I supported. When I discovered he’d served on a Blue Water craft in the Mekong Delta. we got him over $4 Grand a month! And it was through Jerry that AnCan found our Care Partner Lead Susan Lahaie, and her late husband, Ron Silverio.
Jerry decided he wanted to document his last years. He bought a fancy camera, the softtware program First Cut that he taught himself, and started making videos. It did not hurt that he had many connections to assist him with video, audio, editing and production. In Jerry’s dear memory, I want to bring several videos to your attention that are now lodged on You Tube. You’ll find me reluctanty appearing in two of them!
Jerry Carniglia, Painter is a short video displaying his remarkable technique. I suspect, although I’m not certain, this canvas may be one of the 3 Carnigloa paintings I have hanging in my casita. Much of his work was donated to UCSF and to Larry Fong personally. He is collectable and had several shows.
Jerry Cut 3 – is an edited collage of several clips Jerry made in his own memory. He intended them to be watched as you are doing today This is Jer!!
Painting A Quiet Radical, a 5 min short, is scripted and acted by Jerry and friends who also lived with advanced prostate cancer. Other than myself, the other’s are no longer with us. His Tony award winning director friend, Tony Taccone refused to have any part of this, then showed up at the read-through and directed the whole 9-yards!
Signs is the re-enactment of a true event when Jerry went for an evening stroll along the railroad tracks close to his factory, He tripped, fell, knocked himself out and almost got run over by a train. I tracked him down several days later in the hospital. A few months later Jerry called me up one Monday morning in the Fall and told me to come by that afternoon. We were filming! I asked what – and where’s the script. He said – “Just show up wearing shorts and sandals. You don’t need a script!” Gotta love this man.
This post is a tribute to Jerry Lee Carniglia. He died on June 7, 2015 – may his memory always be a blessing. It will to me.
“…messaging by prostate cancer support groups and foundations lacks all credibility because they receive significant sponsorship and support from Big Tech and those in the business of prostate cancer.”
When Bert Vorstman MD chose the byline Is the cure worse than the disease? in his recent The Active Surveillor article discussing his perceived truth about prostate cancer, it raised a huge red flag for us at AnCan. If you live with anything more than Gleason 3+3 disease, there is no cure. And doctors who speak about cure will invariably backtrack and agree that they should be speaking about a durable and contnuing remission, a phrase coined by the late Dr. Snuffy Myers.
Vorstman is correct in saying that PSA is not specific to the prostate gland – the salivary glands produce it too, but it’s no ‘barefaced lie’ and raises another red flag – that further tests are needed to find out why PSA is elevated.
I am loathe to use the title Dr. when this MD claims that most published medical evidence is false. I can’t pretend to imagine the standard of his medical education in New Zealnd. But I can agree with Vorstman and his Ablin sidekick, Ron Piana, that some 3+3 prostate cancer should not be named cancer and calls for surveillance rather than surgery or radiation.
That’s about all we do agree on. Both fail to appreciate AnCan’s position that the PSA test is about information, not treatment. So discouraging PSA testing throws the baby out with the bathwater. Where are we supposed to source this headsup information elsewhere? Despite repeated request in the comments, that I urge you to read, nothing is suggested.
I had a PCP who didn’t believe in PSA testing. My PSA leapt from 2 to 10 in 2 years and had it not been for my uroogist, who I was seeing for a kidney cyst, I would now be the wrong side of the grass with no AnCan. There are many, many men like me – ask the minions of de novo metastatic men showing up in our support group weekly. Is the cure worse than the disease? is ignorant. It patently fails to acknowledge that many men with prostate cancer require treatment to avoid a prolonged and painful death.
You decide if AnCan provides a distorted message and if the prostate cancer world is one big, distorted financial scheme. Is that ‘The Great Prostate Hoax’ (Ablin & Piana) or are they the hoaxsters?
What concerns us equally at AnCan is how The Active Surveillor can publish this nonsense, followed only days later by this headline “Don’t miss your PSA screening—your life may depend upon it”. Everyone is entitled to an opinion, in fact many of you have heard the expression, “Opinions are like a**holes, everyone has one!” And I’ll add, some people confuse what comes out of one with what comes out of the other.
That said, we don’t have to provide a soap box for opinions that confuse our core audience, and even discourage them from maintaining best medical practices to addres their condition. Howard Wolinsky publishes The Active Surveillor – AnCan loves Howard the way you love that gnarly old uncle who pinches your cheek while sticking a buck in your pocket. He’s truly a treasured member of AnCan’s Advisory Board, and occasional Active Surveillance Moderator.
Raising this post in various AnCan Groups has educated me to understand that Howard’s journalist instinct encourages him to publish all sides of an issue. AnCan’s postion is that anything discouraging men from PSA testing inhibits efforts to fight prostate cancer. We are not just critical of HW; we suggest it seriously questions his credibility when he then encourages men to get tested a coupleof days later. What to believe? Don’t be an enabler.
What do you think? In the Vorstman/Piana post, Howard encorages you to let him know – please do! howard.wolinsky@gmail.com
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
It’s certainly more than one person can handle. In fact, it’s more than myself, a volunteer, plus 4 contract people and an outside bookkeeper can handle. I’m not the only volunteer. I am so honored and privileged to say it’s more than around 100 volunteers can handle, and we could not manage without your efforts – much gratitude.
For some time, the executive function has been too much for me to manage alone, even with the help of our volunteer Executive Board made up right now of Bill Franklin, David Muslin and Stuart Jordan – btw, we’re looking to add to that too. We’ve been looking to hire executive help and the perfect solution has presented itself.
Some of you may be aware of the term, Fractional Executives – The Charity CFO just ran a podcast. AnCan has been fortunate enough to find one who knows us intimately. Courtesy of the USAF and subsequently, extensive consulting experience at The Mitre Corporation, our Board President, Bill Franklin, is voluntarily reducing his hours at Mitre to take on a contract position of 16-20 hours a week with lil’ ol’ AnCan.
As our Board President since August 2021, Bill knows all the ins and out, he’s seen us grow, and most significantly he’s willing to work with me! Bill’s also looking to phase out of Mitre and find new challenges as he approaches retirement. AnCan provided a great solution and we welcome him as our new Chief Operating Officer.
Bill will continue as Board President as well as assuming oversight over many of the operating and administrative duties, from finance and control to insurance, compliance and many special projects – viz. the Impact Report !?! To be honest, Bill’s been doing a lot of this informally but can now spend legitimate time a couple of days a week to help us put our ship, or maybe we should say ‘our bird’, in better order.
Personally, I am thrilled and excited. There’s no one I can think I would rather work with. I welcome him sharing this job with me, and keeping me on the straight and narrow as he has done since joining the Board many years ago. One other person to thank – another aviator, Bill’s wife Misa. If she hadn’t gotten on his case for spending many volunteer hours with AnCan, Bill wouldn’t have come up with this great solution.
Welcome aboard, Sarge… or should I say, Mr. Prez! AnCan welcomes Air Relief
Non-Conspiratorial Questions around the Biden diagnosis?
One of the things AnCan does best is ask questions. We ask them of you, and we suggest you ask them of others. We do that to make you your own best advocate, and we do it to represent our constituency and keep others honest. We do not do it, by and large, to make political waves although I have been known to voice my deep displeasure and distrust of the current Administration and its Leader.
When I, on behalf of AnCan, raised significant questions around Joe Biden’s diagnosis of metastatic hormone sensitive prostate cancer (mHSPC), it was to make it clear that rarely does this arise out of the blue unless someone has been sleeping on the switch. I stated it smelled fishy and there had to be more to disclose. Sure enough,there was.
As one of the first to question, it was reassuring to see the legitimate press, including the Washington Press and the New York Times, asked very similar questions and quoted highly recognized experts, who posed the same questions.
Several articles also interviewed inappropriate subjects. Urologists who should not be treating advanced prostate cancer, medical oncologists who don’t treat prostate cancer, and worst of all blow hard doctors with blood on their hands.
The NYT’s choice of Hopkins Professor Otis Brawley is the most notable offender. Dr. Brawley, a 66-yr old African American, boasts that he has never tested his own PSA. During his time as Chief Medical Ofice at American Cancer Society, Brawley stopped all patient suport for our disease, and spearheaded efforts to stop PSA screening. He was the driving force behind the USPSTF recommendations not to screen. I place the 35% increase in prostate cancer specific deaths over the past 10 years squarely at his feet.
What are some of these important questions? Why wasn’t Joe Biden screened after 2013? Don’t even raise the fact that he turned 70 and the ‘Guidelines’ don’t require it. #1 – they are just guidelines as Dr. Peter Carroll pointed out in his interview with The Active Surveillor, AnCan Advisory Boardie, Howard Wolinsky. #2, continued screening to at least 75 is recommended if risk factors are present. It’s reported that Biden did have risk factors including urinary issues, and a previous cancer that could have been related to prostate. And #3… he’s no ordinary Joe! As a holder of high elected office, Biden should be held to a higher standard.
By the way AnCan believes all men are entitled to a PSA test no matter their age. PSA testing is about information not treatment. Results and treatment are definitely subject to Shared Decision Making. Who was running Biden’s medical welfare as VP and President?
AnCan would hazard a guess the NIH or the Military (Walter Reade, Fort Belvoir) had a hand… or perhaps an index finger involved. We have our own experience of these facilities. Last time AnCan raised valid questions publicly about their care we were asked to back off. How long has Biden been in treatment – do we know it’s mHSPC? We hope it is but won’t know until he’s been in treatment for a while. Yet his Office tells us it is mHSPC. That gives us reason to ask if he’s been on treatment for a while and more is known. No conspiracy – a question based on public disclosures.President Biden’s poor executive function in his debate performance is very typical of men who have been on Androgen Deprivation Therapy (or more extensive hormone therapy) for a period of time. Yes – it could have been flu/covid/ cold; it could also have been MS or Parkinson’s; and it could have been HT now we know his diagnosis.
There are more questions, and there is probably more to come to light. What gave me pause for thought were the critics who came down on me and AnCan hard. We were accused of conspiracy theory and disrespect to the Bidens… just for asking these questions.
One more question… is this a malevolent sign of our times? People are too quick to assign political motive and divisive intent. It’s sad when enquiring and educated minds are lambasted for raising valid questions that deserve answers. AnCan, and I personally, wish the Bidens well. I have always supported and held him in regard. His disease progression may throw light on what was known on Friday, May 16 so keep an open mind. If anything is to come out of this, better screening guidelines for men over 70, and better supervision of Presidential health would be two good outcomes.
Also more focus on how an orange man of 77 with an intact prostate can possibly have a PSA of 0.10 – or is this just another lie the American public has to eat.
onward & upwards, rick davis, founder AnCan Foundation
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 19, 2025
It’s GreatNonProfits time of year for AnCan participants! Each year we need 10 new endorsements to retain our GreatNonProfits Seal, so if you’re relatively new &/or have not endorsed us previously, now’s the time. Just click https://greatnonprofits.org/org/ancan-foundation and tell the short version of why you love AnCan Foundation…. THANK YOU!
President Biden’s Diagnosis
Exceptionally, the Moderators dedicated a few minutes at the beginning of the session to discuss Joe Biden’s denovometastatic hormone sensitive prostate cancer diagnosis disclosed late last week. AnCan recognizes that most of our particpants directly relate. Start around the 20 minute mark if you prefer to skip Rick Davis’ statement and reactions to President Biden’s diagnosis from those present.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix, Blue Earth Diagnostic and Foundation Medicine.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: President Biden’s diagnosis; and, ctDNA testing (rd)
Topics Discussed
President Biden’s mHSPC Dx; younger T3b Newbie faces treatment decision; is ctDNA testing available to patients?; 3rd Pluvicto treatemtn brings heavy side effects; what to expect 2 months after starting a drug holiday; Orgovyx appeal continues; Gent with seizure/cardio issuestakes drug holiday and needs a cardio-oncologist; lowPSAl, pre-chemo Gent starts Pluvicto; should Gent with adrenal insufficiency add 5 mg prednisone?
I loved this man. I found him in 2011, when my buddy Eric Schmier GRHS/z”l asked me to navigate him. That’s the same Schmier after whom we named one of our Virtual Room when his family made a very generous donation early in AnCan’s history. Jerry had been diagnosed with denovo metastatic prostate cancer and was being treated inadequately at Kaiser Permanente in Oakland, CA.
Jerry was diagnosed with denovo metastatic prostate cancer in 2011, and we transferred his care from KP to UCSF as soon as we could under the amazing, watchful eye of Dr. Larry Fong. Larry is the Principle Investigator for Provenge and a highly respected GU medical oncologist. Jer’s prognosis was not great and we got him around 4 years.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
