#Michael J. Fox Parkinson's Research

[hypelens]

Michael J. Fox Honored with Presidential Medal of Freedom: A Legacy of Advocacy and Inspiration

Michael J. Fox, the beloved actor and advocate, has added another monumental accolade to his storied career: the Presidential Medal of Freedom. President Joe Biden presented the award to Fox during a White House ceremony on January 4, 2025, recognizing his tireless work for Parkinson’s disease research and his profound impact on public awareness of the condition.

This prestigious honor highlights Fox’s journey from a celebrated actor to a beacon of hope for millions. Let’s explore his remarkable contributions, the significance of the award, and reactions from the public and political figures alike.

Michael J. Fox: From Hollywood Icon to Health Advocate

Fox first captured the world’s attention with his roles in iconic films and TV shows such as Back to the Future and Family Ties. However, in 1991, at the age of 29, he was diagnosed with Parkinson’s disease—a progressive neurological disorder. Despite the diagnosis, Fox remained active in his career and publicly disclosed his condition in 1998.

His announcement marked a turning point, as he shifted focus from acting to advocacy, founding the Michael J. Fox Foundation for Parkinson’s Research in 2000. The foundation has since raised over $1 billion, funding groundbreaking research and advancing treatments for Parkinson’s patients worldwide.

Presidential Medal of Freedom: The Nation’s Highest Civilian Honor

The Presidential Medal of Freedom is awarded to individuals who have made exceptional contributions to the United States’ security, world peace, or cultural and public endeavors. Fox joins an illustrious group of recipients, including civil rights leaders, scientists, artists, and humanitarians.

During the ceremony, President Biden praised Fox for his resilience and dedication, stating: "Michael J. Fox embodies the spirit of perseverance. He turned his personal challenges into a mission that has transformed countless lives. Today, we honor a true hero."

A Ceremony of Significance

The White House ceremony was attended by notable figures from various fields, including healthcare, entertainment, and politics. Other recipients included former Secretary of State Hillary Clinton, further underscoring the event’s focus on leadership and service.

Fox delivered an emotional acceptance speech, thanking his family, supporters, and the millions of Parkinson’s patients who inspire his work. His words resonated deeply with attendees: "This honor isn’t just for me—it’s for everyone living with Parkinson’s and their families. Together, we’re proving that hope is a powerful force."

Public and Media Reactions

The announcement and ceremony sparked widespread acclaim. Social media platforms were flooded with tributes, with fans and public figures alike celebrating Fox’s achievements.

Fans: Many shared personal stories of how Fox’s work has inspired them, highlighting his unyielding optimism.

Parkinson’s Community: Advocacy groups expressed gratitude for Fox’s dedication to their cause, calling his recognition a victory for all those affected by the disease.

Media Outlets: Coverage emphasized Fox’s dual legacy as a cultural icon and a health advocate, with headlines lauding his transformative impact.

Challenges and Criticism

While the ceremony was largely celebrated, it wasn’t without controversy. Some commentators criticized the selection process for the Presidential Medal of Freedom, arguing that recent recipients have been chosen based on political considerations rather than merit.

Fox’s inclusion, however, was widely seen as a unifying choice. Even critics of the current administration acknowledged that his contributions transcend political divides, reflecting values of courage and compassion.

Michael J. Fox Foundation: A Legacy of Hope

The Michael J. Fox Foundation continues to be a driving force in Parkinson’s research. Its initiatives focus on:

Funding Research: Supporting innovative studies to uncover new treatments.

Patient Resources: Providing tools and information to improve quality of life for Parkinson’s patients.

Advocacy: Working with policymakers to advance healthcare legislation and funding.

Looking Ahead: The Future of Fox’s Advocacy

As he celebrates this milestone, Fox remains committed to his mission. The foundation is launching new programs in 2025, including a global awareness campaign and expanded research partnerships.

In a recent interview, Fox shared his outlook on the future: "We’ve made incredible progress, but there’s so much more to do. I’m optimistic that a cure is within reach, and I’ll keep fighting until we get there."

Conclusion

Michael J. Fox’s recognition with the Presidential Medal of Freedom is a testament to his extraordinary contributions as an actor, advocate, and humanitarian. His journey from Hollywood to the White House symbolizes the power of resilience and the impact of turning personal challenges into a force for good.

As Fox continues his advocacy, his story inspires millions to believe in the possibility of a brighter future. His legacy is not just one of success but of hope, determination, and an unwavering commitment to making the world a better place.

[ayeforscotland]

Ad | Hi folks, I'd previously been getting into the swing of posting Humble Bundle deals and the charities they were helping. With any non-bundle purchases helping to raise money for Endometriosis research and support. Then Humble decided to outsource their partner program to a system called 'Impact' which has honestly been a massive pain to get my head round. Looks like I can't link to bundles directly and they only give me the above link to share.

There is currently:

The TellTale Games Bundle featuring Batman, the Expanse, the Walking Dead, the Wolf Among Us - Currently raising money for Save the Children

The Sid Meier Collection with every Civilization game and DLC I can think of - Raising money for Covenant House and Michael J. Fox Foundation for Parkinson's Research

Math for Programmers Book Bundle which contains a whole bunch of data science, cryptography and Python books - Raising money for Girls Who Code

Learn Unit Game Development Course - From Shaders to 3D to a course on Game Feel - Raising money for Oceana

Super Game Asset Bundle for Unreal, Godot, and Unity. Over 7000 audio, visual and environmental assets - Raising money for Direct Relief.

Not sure if this format is okay, it requires you to visit the link and navigate but hope it helps? Let me know.

[linguisticparadox]

Anyway did you know the current Parkinson's medication they give is literally the same thing they were giving over 50 years ago. Did you know it requires SWALLOWING and the only option if you develop impaired swallowing from The Disease That Impairs Your Swallowing is to start crushing it and adding it to applesauce and when that stops working the only thing left is to have a fucking tube surgically installed leading to your stomach. Did you know there is not even a version that can be given by IV!!!! There WAS an oral disintegrating tablet but the manufacturer fucking discontinued it. 🙃

And this medication has to be given MULTIPLE TIMES A DAY (there is an extended release version but it is prohibitively expensive so we only give it to dad before bed. Fun fact it does not last until morning!) and it loses effectiveness over time until eventually it just stops working.

(There is a new continuous subdermal pump version but it only just got FDA approval in the US and it will be at least 10 months before it's covered by Medicare, you know, the insurance that probably like 99% of Parkinson's patients in the US* rely on???????? Also iirc it's the same medication just a new delivery route so the issue of developing resistance still applies!!)

(Did I mention that Medicare also does not cover the cost of a nursing home lololol and THOSE AREN'T FUCKING CHEAP.)

Did you know Parkinson's can cause dementia symptoms including loss of executive functioning to the point that sufferers lose the ability to make decisions, which leaves them vulnerable to abuse? And that the medication does not help the cognitive symptoms???

Did you know patients' breathing remains intact so what kills them is usually smth like aspiration pneumonia, bedsores, or a serious fall?

Thank god for Michael J. Fox btw, it fucking sucks he has to deal with this but he has done SO MUCH to get new research funded, which is probably why we're just now having new breakthroughs like the pump or discovery of biomarkers that can be used to diagnose the disease before symptoms manifest.

Anyway I know there are a lot of causes needing our attention now but if you can it would be cool if you donated to the Michael J. Fox Foundation here:

* This is hyperbolic, I don't feel like looking up the actual number (if they even track it). Parkinson's mostly affects old ppl and in the US old ppl have Medicare ok.

Also all of this is possibly specific to the US but that's where I am and we are not moving to a Whole New Country just to squeeze a couple more years of misery out of my dad. ✌️

[zenithabovemarshland]

Just thinking aloud about fame, celebrity, and Pluto in Aquarius...

When Britney Spears was released from the conservatorship there were posts about how it's likely Britney might not be as internet-literate or socially appropriate as we'd like her to be, considering everything she went through. The posts encouraged others to be patient and understanding, and not to cancel her if she happens to make any mistakes.

Just now I saw a similar point about Gypsy Rose Blanchard. Now that she's released she intends to make herself very public online, but her entire life (32 years) has been spent in either one prison or the other. There are concerns for how she might adjust to the internet we know today, seeing as how she likely didn't get the opportunity to grow alongside social media the way the rest of us did.

In the 2024 Year Ahead Forecast from The Astrology Podcast they brought up the Pluto in Leo generation, and how that period of time and that generation relate to the making of our concept of "celebrity". They're also the generation that are holding on to power (like the presidents of the USA). Pluto in Leo gen is also unique because it's one of the only Pluto generations that is likely to live to their Pluto opposition, which is happening now. With this Pluto opposition, the pod talked about how the idea of who gets to be in power is likely to change. As well as our concept and relationship with "celebrities".

In 1991, Pluto in Scorpio (square to Pluto in Leo, if it matters. Whether it matters is still something I'm exploring here), Michael J. Fox was diagnosed with Parkinson's. I'm not actually sure how public illness was allowed to be previous to that. I just remember growing up how Michael J. Fox was something of a special case, and his celebrity status helped make massive leaps in awareness and research for Parkinson's.

Hollywood became big in the 1920's, when Pluto was in Cancer. While Pluto has been in the opposite sign, Capricorn, I feel like I've heard about a million celebrities coming out with illness. Justin Bieber, Selena Gomez, Bruce Willis. Recently, Celine Dion. If you Google it, there are lists of dozens of celebrities with chronic illnesses. Not to mention mental illness, which has become that much more public.

My feeling at this point is that there are themes of privacy, hidden and internal illness, and representation here that we've seen getting dug up from the Pluto in Cancer era. True crime stories from old Hollywood, being open about mental illness, exposing how child talents have been exploited by the industry, and of course, hidden afflictions to celebrities are changes we've seen around fame through the trine, Pluto in Scorpio, and opposition, Pluto in Capricorn.

Most obviously, though, who gets to be famous has changed the most in the last 20 years. It used to be only special, hand-picked people who got to be famous. Now it could be anybody with a cell phone.

I think of this blog post on the Aries Point by Ace (AliceSparklyKat), where they talk about how the angular points seem to manifest. They've noticed that celebrities whose Sun is at 0 degrees Cancer seem to be regarded as chameleon-like in their nationality, form, or culture, and those with 0 degrees Capricorn seem to be known for a peak example for one nationality, form, or culture. I wonder if this can be seen in this shift to influencer culture, particularly in the rhetoric that celebrities until now have been made to represent everybody. But now, after Pluto in Capricorn, we are much more aware of the consequences of not having fair representation of more nuanced, individual experiences. At first it was all about art and talent. Now, it's about the hard tacks of who gets what job and why, and the consequences of story. Very Cancer to Capricorn opposition coded.

Anyway, I feel like I've noticed a lot of celebrities becoming ill in the past, and now I feel like I'm seeing some "taboo" issues come up in influencer culture. I'm wondering about how this could be gearing us up for Pluto in Aquarius.

What do you think??? I really want to hear your thoughts!

[warningsine]

A small new trial published in the journal Nature Medicine describes what would be two firsts for Parkinson's disease, if they pan out: a diagnostic test and a potential immune-based treatment that works similarly to a vaccine. The research is still early, but researchers are excited by the prospect of advances for a disease that lacks good diagnostics and treatments.

The target of both innovations is alpha synuclein, a protein that takes an abnormal form in Parkinson's patients—aggregating in their brains and destroying nerve cells involved in motor and some cognitive functions. While researchers have long known that these proteins are involved in the disease, finding ways to measure and target them has not been easy.

The (potential) Parkinson's vaccine

The Florida-based biotech company Vaxxinity developed a vaccine, or what it calls an active immune medicine, to train the immune system to attack only abnormal versions of the protein—which are improperly folded—and not the regular forms. This would essentially help people's bodies treat themselves.

“The idea is that patients should recognize their own misfolded proteins, and it is personalized because their own immune systems are doing the work,” says Dr. Mark Frasier, chief scientific officer at the Michael J. Fox Foundation for Parkinson’s Research, which funded the testing part of the study.

The Parkinson's test

The new diagnostic test for Parkinson’s, which was developed by researchers at University of Texas and Vaxxinity, uses samples of cerebrospinal fluid to measure a person's levels of abnormal alpha synuclein. If the U.S. Food and Drug Administration (FDA) grants it full approval, it will become the first test for diagnosing Parkinson's. (The FDA classified it as a breakthrough device in 2019, a status that expedites access to innovative technologies where there is unmet need.) “Without [such a test], you’re kind of shooting in the dark,” says Mei Mei Hu, CEO and co-founder of Vaxxinity.

Alpha synuclein has been tricky to measure in the body for several reasons, says Frasier. While everyone has the protein, abnormal forms of it occur in relatively small amounts, so they're harder to detect via imaging. This type of alpha synuclein also tends to clump inside cells rather than outside of them, making it even harder to see. If clumps are large enough to become detectable, they can look structurally similar to amyloid or tau—the proteins implicated in Alzheimer’s disease—so imaging tests might misdiagnose people with Alzheimer’s rather than Parkinson’s.

Read More: Michael J. Fox: Chasing Parkinson's Treatments

The test overcomes those hurdles by cleverly exploiting normal forms of the protein. Parkinson’s experts believe that tiny amounts of abnormal alpha synuclein circulate in the spinal fluid of patients, but are too small to be detected through imaging. To run the new test in the study, researchers take normal forms of the protein in the lab and add them to samples of spinal fluid from patients; that prompts any misfolded protein that might be present in the samples to pull the normal proteins into misfolded aggregates, amplifying the signal for the abnormal form. Scientists then use a fluorescent probe to detect how much antibody to the misfolded protein patients generated, resulting in a biomarker, or stand-in for the treatment effect.

This test would be a critical advance because it makes it possible to identify patients with abnormal alpha synuclein at the earliest stages of the disease, when treatments might be more effective.

With more data from patients, researchers hope to further refine what different levels mean, so that the test will be able to tell not just if a person has Parkinson's but whether someone might be at a greater risk of developing it. Currently the test is only used in research studies, but more results like these—as well as data on whether the same process can be applied to blood samples—could speed the test to getting approved for wider use.

What the study found

The trial—conducted by researchers at the University of Texas, the Mayo Clinic, the Michael J. Fox Foundation for Parkinson’s Research, and Vaxxinity—included 20 people with Parkinson’s. It was just designed to test the safety of the approach, so the study only provided hints about the treatment's effectiveness. Everyone received three shots over nearly a year; some contained the treatment at different doses, and some contained a placebo.

Overall, people receiving the vaccine generated more antibodies against the abnormal alpha synuclein protein than those vaccinated with placebo, as measured by the Parkinson's test. Antibodies started to ramp up about four months after the vaccinations began.

“What is unique about our technology is that it can stimulate the immune system to produce very, very specific antibodies against toxic forms of alpha synuclein, and do it in a safe way, which is reassuring,” says Jean-Cosme Dodart, senior vice president of research at Vaxxinity and senior author of the paper.

According to the test results, about half of the patients in the trial showed high levels of antibodies against the misfolded alpha synuclein, and most of these patients received the highest dose of the vaccine. They also scored the highest on motor and cognitive tests. There were too few patients to adequately assess any changes of Parkinson’s symptoms, but the researchers believe that longer follow-up with those tests, and potentially more frequent or higher doses of the vaccine, could lead to improvements in those scores. “The results are very, very encouraging,” says Dodart.

“This paper demonstrates that in a small number of people, the vaccine is having an impact on misfolded alpha synuclein, which is really exciting,” says Frasier. “We are now in the biological era for Parkinson’s disease."

[dear-indies]

hello! maybe i am misremembering, but i do remember you reblogged some guides on how to write characters, such as stereotypes to avoid when writing characters of color. do you have a tag or a list of guides for how to write disabled characters and stereotypes to avoid? i am only hard of hearing and even that is a weird experience that often isnt similar to other peoples expereinces, but i would love to write more disabled characters and want to make sure i am listening to disabled people and are respectful about the character im creating! thank you so much for all the amazing guides and info you are putting out! your masterlists have helped me find some amazing faces and are super useful ♥

Hey anon! When I research characters, for this instance characters with disabilities, I google the disability and then "stereotypes" or "what not to do" or look on Youtube because there's so many people on Youtube educating others about their disabilities.

The following speak about their disabilities in videos!

Special Books by Special Kids interviews a variety of people (not just children!) with various disabilities. Alyssa, a part of the team, also has mental health disorders which you find a video about here!

Jessica Kellgren-Fozard who has hereditary neuropathy with liability to pressure palsy, postural orthostatic tachycardia syndrome and hypermobile Ehlers-Danlos syndrome with Marfanoid phenotype causing blindness in one eye and deafness.

Chella Man who is deaf and uses cochlear implants, have done several interviews and videos on the past about his experiences!

Molly Burke who is blind, has a guide dog!

Lucy Edwards who is blind.

The Blind Life , Sam who is blind.

Matthew and Paul, Paul is blind, uses a cane and has a guide dog.

Alex1Leg who is a leg amputee.

Footless Jo who is a a foot amputee and a stroke survivor.

Spencer2TheWest who is a double leg amputee.

Squirmy and Grubs, Shane has muscular dystrophy.

The Frey Life, Mary has Cystic Fibrosis.

Chelsea Bear who has Cerebral Palsy.

Annie Elainey who has is autistic and has EDS.

Gem Hubbard who is a wheelchair user.

PARALIFE, Craig and Claire, Craig is paraplegic.

Mason Branstrator who is paraplegic.

Roll with Cole & Charisma, Cole is quadriplegic.

Jordan Bone who is quadriplegic.

Angela Rockwood who is paraplegic - links to her Instagram!

Jade O'Connell who has Tourette’s syndrome.

Lewis Capaldi who has Tourette’s syndrome.

Zach Kornfeld who has ankylosing spondylitis.

Georgia Rankin who has skeletal dysplasia.

Taylor Nicole Dean who is a recovering addict.

Documentaries / life stories:

Michael J. Fox who has Parkinson’s Disease.

Celine Dion who has stiff-person syndrome.

Shows:

Ryan O'Connell who has cerebral palsy, created and stared in "Special" which is an semi-autobiographical show.

Kayla Harris who is a wheelchair user with a spinal cord injury, created and started in "We Might Regret This".

Some other things!

A Guide to Writing Disabled Characters - Tumblr page!

Mobility Aids playlist (wheelchair users)

Mini Masterpost: Sources for Writing Wheelchair Users

Writing Wheelchair Users

+ will add more when I remember them!

[mariacallous]

When long-shot presidential candidate Robert F. Kennedy Jr. announced that Nicole Shanahan would be his running mate, spectators were confused. Why would Shanahan, a wealthy Silicon Valley luminary and tech entrepreneur who has donated heavily to scientific causes and Democratic politicians, throw her lot in with the nation’s foremost anti-vaccine activist, a man who’s claimed that 5G causes “DNA dysfunction”?

But in a revealing video that aired with her campaign announcement this spring, Shanahan talked about her young daughter’s autism diagnosis, and proclaimed that chronic diseases in children are caused by “environmental disruptors that cause inflammatory symptoms which then reduce the child’s ability to heal.” Shanahan’s subsequent podcast appearances quickly made the matter far more clear: She, like Kennedy, has deeply held suspicions about vaccines.

Around that time, she told famed music producer Rick Rubin on his podcast that a lightbulb moment for her came in 2020, after her then 18-month-old daughter Echo was diagnosed with autism. Shanahan told Rubin she had read “every publication, every related publication, every indication, every clinical trial I could get my hands on.” In her telling, this project of deep research led her to a discovery so powerful, so taboo, that she hesitated to talk about it.

“So, medications impact our cellular biology in significant ways, and some medications more than others,” she said. “And in that category are vaccines. And it's hard to say that today, right? And I hesitated for a while to even mention it with friends because vaccines are such an inflammatory topic right now.”

In recent months, in addition to promoting long-debunked ideas about the link between childhood vaccines and autism, Shanahan has also claimed the Moderna mRNA vaccine is unsafe and called for it to be “recalled immediately.” She has a lot of money to bring these views to public attention: While Shanahan’s philanthropic efforts were initially carried out though the family foundation of her then husband, Google cofounder Sergey Brin, she has subsequently funneled her efforts into her own foundation, backed by the billion-dollar fortune reportedly made, in large part, through her divorce.

Shanahan has donated at least $10 million directly to the Kennedy campaign, as well as $4.5 million to two super PACs supporting Kennedy’s run. At the same time, she’s also putting money behind at least one clinical trial that an autism science expert told WIRED they believe is alarmingly vague and poorly designed.

Adding a layer of personal drama is that Shanahan’s ex-husband is taking a quite different approach to the same problem. Multiple sources tell WIRED that Brin’s family foundation is in talks to begin funding serious research on autism and other neurodevelopmental disorders within the next year, something previously mentioned as a possibility in a 2022 Fortune story. (In the autism world, it’s “the worst-kept secret ever,” one person said.)

Brin’s foundation previously donated millions to the Michael J. Fox Foundation before creating an entity called Aligning Science Across Parkinson’s, or ASAP, in 2019. While everyone familiar with the matter stressed that the discussions are still in their early stages, the foundation is expected to support other research with similar largesse, looking for ways to accelerate science around neurodevelopment.

A person familiar with the matter noted that Brin, unlike Shanahan, doesn’t appear to discuss their daughter’s autism diagnosis or treatment publicly. (He also hasn’t commented publicly on Shanahan’s campaign or post-divorce philanthropy.)

In other words, two phenomenally wealthy ex-spouses are poised to become the respective faces of autism philanthropy and autism pseudoscience. This is potentially much more consequential than Shanahan’s candidacy, and the people involved in these worlds are already either deeply apprehensive or thrilled, depending on their perspective.

“Other than Robert F. Kennedy Jr., I have never heard any candidate for major office speak with such clarity, candor, and courage about autism and chronic disease,” John Gilmore, the founder of the Autism Action Network, a group that blames vaccines and other environmental factors for autism, wrote recently.

“Shanahan’s autism knowledge comes from her own lived experience,” he added. And then, in bold, he proclaimed, “Nicole Shanahan is one of us.”

Shanahan has helped fund projects ranging from labs studying female fertility and reproductive longevity to Evolver, a Cate Blanchett-narrated “collective virtual reality experience which drops audiences deep inside the landscape of the body.” These days, though, her true passion appears to be for pseudoscience. This has positioned her as a useful messenger to communicate to the anti-vaccine movement that Kennedy is still with them, even as he’s occasionally and fitfully tried to downplay his long career in that world. Not just a powerful funder and backer, Shanahan is a symbol of his unwavering commitment to the cause.

Many parents develop vaccine injury suspicions after their child starts to display symptoms of autism spectrum disorder or other developmental conditions; those suspicions can take them deep into a world of pseudoscience and distrust. In a 2023 interview with People that focused largely on her divorce, Shanahan described that process for herself.

“I talk to two scientists a week, typically, whether they're neurosurgeons or neurologists or mitochondrial experts,” she told the outlet. “I chat with a lot of other mothers of autistic children because I think mothers are some of the most well-educated and researched … They’re trying some of these autism interventions and they’re able to tell you with greater accuracy than any published medical paper what they’re seeing in their children.”

Despite Kennedy’s and Shanahan’s concerns, though, vaccines don’t cause autism. A huge body of research and evidence, including a major decade-long Danish study of people who received MMR vaccines, published in 2019, has demonstrated that over and over and over. A second theory, that thimerosal, a preservative previously used in some childhood vaccines, causes autism has also been repeatedly debunked. (Thimerosal was never used in MMR vaccines, creating a clear logical issue for anti-vaccine activists who use that argument.) Yet another claim, that “too many” childhood vaccines at once can cause autism, has also been conclusively debunked.

Suspicions like Shanahan’s have nonetheless led many parents to pursue life-changing actions, spending money on bogus treatments for their children and getting sucked into an anti-vaccine movement—of which Kennedy has been an integral part—that monetizes their pain and frustration.

For all of these reasons, promoting anti-vaccine rhetoric on a national political stage could be “extremely dangerous,” says Azza Gadir, an immunologist who’s spent a significant amount of time counseling people and listening to their concerns about vaccines.

“Parents of children that are sick tend to be very angry and despondent and feel guilty, actually,” she adds. “Seeing a candidate running on this platform is going to appeal to people who are looking for answers, especially when they're not speaking in specifics. My concerns are that vaccine rates will go down.”

Some of the science that Shanahan is helping to fund is speculative but potentially promising. According to Politico, she’s donated to the UC Davis Mind Institute, which studies autism and other neurodevelopmental conditions, and in January 2023, she was named as an investor in a company called LinusBio that claims it’s developing technology to examine human physiology and ferret out possible neurodevelopmental disorders through a single strand of hair. The company claims that one of its early technologies “can assess the likelihood of autism at birth with 80 percent to 90 percent accuracy, and assist with personalized treatment decisions.” (The test is not yet federally approved, and Linus’ cofounder and CEO told NBC last year that it should solely be used by physicians as a diagnostic aid.)

But Shanahan is also funding what she described to Rubin as “the first clinical trial in photobiomodulation and autism,” which is scheduled to be conducted at the University of Texas at Austin and overseen by UT professor Francisco Gonzalez-Lima. The $3.7 million grant was announced by the university in May. The study says it will administer infrared light to patients using headbands that emit LED light intended to target mitochondrial enzymes. The study cites previous research to suggest that mitochondrial function is often impaired in people with autism spectrum disorder. (On Rubin’s podcast, Shanahan praised Gonzalez-Lima as a “mitochondrial guru.”)

Alycia Halladay is the chief science officer at the Autism Science Foundation, an organization that funds scientific research on autism and promotes evidence-based interventions for it. She says she believes the study that Shanahan is funding at UT Austin is “doomed to fail.” She adds that she’s also puzzled by how Gonzalez-Lima, who is not an autism researcher, came to be the one who’s overseeing the study, which is listed on ClinicalTrials.gov as “not yet recruiting.” It features a “huge age range” of participants (ages 4-60), which is unusual and not particularly good science, Halladay adds, since autism symptoms can vary so widely across different age groups. “This would likely never be funded in a peer-reviewed mechanism because of the wide age range,” she says. Most well-designed autism studies focus on people experiencing the same kinds of symptoms; a large and vague study tends to be difficult to extract meaningful data from.

“I describe it as driving through Ohio and trying to get a radio signal,” she says. “Sometimes it is all noise. Sometimes you can hear a voice and a song.” (She did, however, praise the fact that the study is a randomized controlled trial, usually the gold standard for experiments.)

When asked for comment by WIRED, Gonzalez-Lima didn’t respond to questions about how Shanahan came to fund the study, but complained that a previous story mentioning his work published by NBC had, in his view, unfairly characterized what he called Shanahan’s “extraordinary intelligence, generosity, compassion and positive world vision” as well as “her generous support of our groundbreaking and rigorous scientific study.”

He also disputed some of Halladay’s points. “Even the US FDA has already given ‘breakthrough discovery’ status to the beneficial use of brain photobiomodulation targeting mitochondria in autism based on recently published and ongoing studies,” he wrote. “Second, autism is a lifespan condition and should be studied accordingly. Third, nothing is ‘usual’ about cutting-edge frontier research.”

Halladay says that while “breakthrough” status has been granted for a wearable LED device for children diagnosed with autism spectrum disorder ages 2-6, it’s to treat anxiety, not to improve cognition and behavioral symptoms, the stated purpose of the Gonzalez-Lima study. (Breakthrough device status is intended to help speed the process of premarket approval; a device still has to be authorized by the FDA before it can be sold to the public.)

The Gonzalez-Lima study says that it will send home participants with light-emitting headbands and have participants report back on their progress. That, Halladay says, is also not very precise, since parents and caregivers often want to see progress that may not be objectively there. “These parents are really desperate for improvement in some way,” she says. The home study will require the participants to wear the headbands, but does not, Halladay points out, spell out any adaptations for autistic children or adults with severe sensory issues who may not be able to tolerate wearing them.

Shanahan is also doing her own self-styled experiments with light at home; she told Rubin this spring she’s attempting to repair her daughter’s own mitochondrial function that way.

“I have my daughter swim while the sun is still rising because as the sun rises, the wavelengths are a bit longer,” she told him. “I'm no expert in this, but they're easier for our bodies to absorb. And the light from the sun is incredibly healing. And it's almost like morning sunlight in particular is like chicken soup for metabolic health, for mitochondrial metabolism.”

As NBC News’ Brandy Zadrozny noted in her recent profile of Shanahan, much of this focus on light seems to be due to Shanahan’s affinity for Jack Kruse, a neurosurgeon who dove down his own rabbit hole in 2007 following a knee injury and came out of it convinced that “man-made light” is the cause of a variety of diseases and mitochondrial dysfunctions. Zadrozny reported that it was Kruse who told Shanahan that she was responsible for her daughter’s autism because of her exposure to vaccines and artificial light. (Kruse has also tweeted about the conversation, saying that Shanahan was “all ears and had an open mind.”)

Kruse did not respond to a request for comment from WIRED, but according to his social media posts and podcast appearances, he’s a bitcoin enthusiast and vaccine- and sunscreen skeptic now partially based in El Salvador, who promotes Great Reset conspiracy theories and thinks Covid was a “compliance test” to execute a “financial coup” on American citizens. Kruse has effusively praised Shanahan as the right choice for vice president because, he claims, she’ll have the ability to combat the evils of Big Tech.

“She knows what her ex is capable of,” he proclaimed on X, referring to Brin. “She also knows how to deal with their policies.”

Shanahan emerged from her divorce with both a lot of money and a seeming desire to be taken seriously in her own right as a founder, investor, and someone with an interest in science. She already had an impressive legal résumé: a graduate of Santa Clara University School of Law, she’s been a fellow at CodeX, the Stanford Center for Legal Informatics. She’s also the founder of ClearAccessIP, a patent-valuation and management company that was acquired by another company in 2020.

In addition to autism research, Shanahan had also already begun building another identity for herself, as a funder of research on extending female fertility and an ardent opponent of IVF. Her foundation Bia-Echo, acccording to tax records, was founded in 2019 with a $23,148,744 donation in shares from Brin. It has focused primarily on criminal justice reform, addressing climate change through regenerative agriculture, and women’s reproductive longevity.

Shanahan has said in many interviews that she and Brin struggled to conceive, and that she was identified as a poor candidate for IVF due to an earlier diagnosis of polycystic ovary syndrome. (Shanahan has said on a podcast that she was later able to conceive without IVF, through the use of “liver cleanses,” acupuncture, sleep, and “lots of fruits and vegetables,” among other things.) She came to believe that IVF was unscientific, marketed to women for commercial reasons.

“It became abundantly clear that we just don’t have enough science for the things we are telling and selling to women,” she told the Australian Financial Review, adding, “It’s one of the biggest lies that’s being told about women’s health today.”

This role of an audacious founder who bucks conventional wisdom seemed to agree with Shanahan. In 2019, she traveled to speak in Washington, DC, to the National Academy of Medicine, where she was supposed to announce a $10 million commitment to funding fertility research; instead, she announced onstage that she would give $100 million.

Most notably, Bia-Echo was the seed funder for the Global Consortium for Reproductive Longevity & Equality at the Buck Institute for Research on Aging, a private biomedical institute; she also invested $8 million to found Bia-Echo Asia in Singapore, which focuses on reproductive longevity as well.

Though Shanahan attracted a good deal of positive or at least neutral attention for the work she put into funding reproductive health, the Daily Beast reported that two sources had told it that Shanahan had attempted to “intervene” in the Buck institute’s work.

Jennifer Garrison, cofounder and director of the Global Consortium, denies that Shanahan had interfered. “I’m incredibly grateful to Nicole and the Bia-Echo Foundation for recognizing early, very early, long before it was in the public venue, this idea that women’s health research is woefully understudied, and understudied because it’s underfunded,” she says. “It’s not like Nicole told me she was planning to run for vice president, and I haven't talked to her since then. It seems like a really difficult path she’s chosen. I’m sure she has reasons for it, but I don't know what they are.”

As the campaign has worn on, Shanahan has emerged as a promoter of a variety of pseudoscience and poorly conceived ideas, cheering on a “homesteading” influencer who recommends using a beef tallow balm instead of commercial sunscreen and sitting down for a conversation with an 18-year-old filmmaker and self-styled investigative journalist whose documentary explores a purported link between food and cancer.

And she’s continued to parrot inaccurate conspiracies about vaccines and how they’re tested and regulated. Soon after announcing her candidacy, she sat down for a warm chat with Stanford professor Jay Bhattacharya, who was a signatory on the Great Barrington Declaration, which opposed Covid lockdowns and social distancing in the pandemic’s first year in favor of a scientifically dubious proposal wherein people would build herd immunity through mass infection. In the conversation, Shanahan claimed that “nothing incentivizes” vaccine manufacturers not to roll out unsafe or insufficiently tested vaccines. In fact, vaccines are extensively safety-tested before being made available to the general public.

For someone vying to help oversee federal agencies, Shanahan also sometimes doesn’t demonstrate a strong understanding of them. In a tweet, she got the role of the Vaccine Adverse Event Reporting System, known as VAERS, strikingly wrong, calling it “the body that determines if someone injured by a vaccine can be compensated.” That’s not what VAERS is; as the name suggests, it allows anyone to report what they believe is a side effect from a vaccine. Scientists then study those signals to determine if a widespread side effect is happening. The system works so well it led to an extremely rare recall, and, ultimately, the permanent suspension of a rotavirus vaccine in 1999, after it was found to cause an intestinal blockage called intussusception in some children. (It was replaced with two other rotavirus vaccines that are safe and effective.)

Despite all her campaign efforts, Shanahan does not seem to have been an overwhelmingly popular choice with Kennedy’s existing base, and didn’t provide an appreciable bump in the polls. Every video in which she’s featured is flooded with comments expressing frustration or anger that he didn’t choose a more well-known political figure like Tulsi Gabbard. Her anti-IVF stance has also earned her the ire of any number of voting-age women, as a casual scroll through TikTok would reveal. The Washington Post also noted recently that Kennedy and Shanahan don’t seem to spend much time together on the campaign trail, and have “sometimes discordant” stances on some issues like abortion.

But for all these enormous obstacles in making herself into a credible political candidate, for the new anti-vaccine movement Shanahan finds herself increasingly drawn into, she represents an almost endless source of money, mainstream attention from Silicon Valley, and, of course, a new sheen of legitimacy. Insiders familiar with the anti-vaccine world predict to WIRED that when her long-shot candidacy ends she’ll join Children’s Health Defense, the anti-vaccine organization which Kennedy founded and where he’s currently chairman on leave.

Others wondered how her anti-vaccine work might set her on a possible collision course with her ex-husband’s future funding of autism research.

In response to two requests for comment for this story, Shanahan tweeted a screenshot of WIRED’s emails to her, including the reporter’s phone number, and wrote, “how about your autism science experts join an open discussion on trial design and healing, here on a spaces on @X?” She added, “Let’s use these politically motivated attacks (by media outlets whose ownership and ad dollars support the status quo), to help bring the issues back to the people and great scientists, at wonderful institutions, who are working tirelessly to help discover new tools for healing.”

Since joining the Kennedy campaign, Shanahan has not given interviews to virtually any mainstream publications. On X, she recently also reprinted an interview request and list of questions from NBC reporter Brandy Zadrozny, complaining that Zadrozny was a working up a “hit piece” and that, in her words, journalists “seem less and less focused on the issues facing the American people.”

In the end, public health experts worry that the rhetoric Shanahan is promoting could be immensely harmful to the people she claims to be trying to help: autistic kids and their families. Sociologist Catherine Tan noted in a CNN op-ed that Shanahan is strengthening the misbegotten autism “recovery” industry, which preaches that the condition can be “cured,” and which often promotes treatments that are, in Tan’s words, “incredibly harmful as well as wildly expensive.” Autistic self-advocates have said time and again that a focus on “curing” autism is offensive and wrong-headed.

Alycia Halladay of the Autism Science Foundation says she’s disappointed to see Shanahan focusing on unproven research and promoting pseudoscience about autism, instead of applying her considerable wealth and intellectual curiosity towards something else.

“Why are we focusing on light that shoots through the skull when she could be funding training programs for developmental pediatricians?” she asks. “She could be studying things that have a chance of working. I don’t know who advised her on this.”

Halladay acknowledges Shanahan’s desire to help her own daughter any way she can, and to be responsive to her needs. As a candidate for vice president, however, she adds, “her scientific interests and investments should be held to a higher standard. Taxpayers should feel secure that their money is going towards scientifically valid research.”

[secondlife]

Celebrate the future at the 16th annual Sci-Fi Con in Second Life running from May 24th through June 4th with proceeds going to the Michael J. Fox Foundation in support of Parkinson's research.

Info ➡️ http://scificon.org

Destination ➡️ https://secondlife.com/destination/sci-fi-con

[fridagentileschi]

“Prima della malattia ero Mike l'attore di Ritorno Al Futuro, poi sono diventato Mike l'attore col Parkinson. Adesso sono solo Mike col Parkinson. La malattia ha consumato la mia carriera e in certo senso è diventata la mia carriera. Ho dovuto ricostruirmi una nuova vita quando ero già molto felice di quella vecchia.

Non guardo alla vita come a una battaglia o come a una lotta. So accettare. Dico ‘vivere con’ o ‘lavorare con’ il Parkinson.

Accettazione non significa rassegnazione, ma significa capire che ogni cosa è quello che è e che ci deve essere sempre un modo per passarci in mezzo. Mi vedo come se fossi un fluido che passa attraverso le crepe e le fessure. A volte mi dà fastidio quando non riesco a fare quello che voglio, ma non me ne frega niente di apparire così.

Con la Michael J. Fox Foundation for Parkinson’s Research siamo diventati i più grandi finanziatori privati per la ricerca sul Parkinson nel mondo.

Abbiamo creato un’infrastruttura per aiutare gli scienziati a trovare un biomarker in grado di identificare il Parkinson prima che i sintomi siano presenti e monitorare l’avanzamento della malattia.

Non importa cosa faccia. Mi piace essere vivo. Mi piace la possibilità di fare le cose. Ecco cosa è la felicità”.

Michael J. Fox

[infosnack]

Michael J. Fox on how far Parkinsons research has come: We dont want to be celebrated. We want to get things done.

Michael J. Fox on how far Parkinson’s research has come: “We don’t want to be celebrated. We want to get things done.” https://www.statnews.com/2023/10/19/parkinsons-michael-j-fox-research/?utm_campaign=rss When Michael J. Fox was diagnosed with Parkinson’s disease at age 29, his clearest symptom was a small one — his pinky finger was twitching. But even by that stage, 70-80% of a patient’s dopamine-producing cells are already gone, Fox said. “What happens in that time, that shadowy place?” Fox said, referring to the period before his pinky finger first started twitching. Thanks to advances in Parkinson’s research, he said while speaking virtually at the STAT Summit in Boston on Thursday, “We can solve that now, we can answer that question — we can say here’s what’s happening, and here’s where we stop it.” Read the rest… via STAT Health - Science, medicine and healthcare news https://www.statnews.com/category/health/ October 19, 2023 at 04:52PM

[bunnziebobcat]

Fan Art Friday - Stuart Little

This week's #FanArtFriday features E.B. White's Stuart Little, and he seems to be riding a hoverboard from Back to the Future 2, all to celebrate his voice artist, Michael J. Fox's birthday today. Oh, and let's make Michael's birthday special by considering donating to the Michael J. Fox Foundation for Parkinson's Research. Thank you.

[epetmezas]

One of my contributions to this years Heroescon Team Cul de Sac Drink and Draw that raising money for the Michael J Fox Parkinson’s research.

[theboysfromaustin]

Very nice to see Michael J. Fox get the Presidential Medal of Freedom for his Parkinson's research advocacy. He deserves it.

[penny-anna]

reasons why u should vote for Michael J Fox:

star of beloved 80s classic movie series (back to the future)

ALSO star of beloved 90s movie series (homeward bound)

raised over 1 billion dollars for parkinsons research

he was stuart little also

80s mullet rockstar michael:

[theultimatefan]

‘Back To The Future’ 40th Anniversary Highlights Fan Expo New Orleans, January 10-12, 2025

The way we see it, if you’re going to build a pop culture convention, why not do it with some style? With apologies to Doc Brown, if our calculations are correct, FAN EXPO New Orleans brings every gigawatt of energy with its first wave of celebrities attending the annual extravaganza, January 10-12, 2025, at the Ernest N. Morial Convention Center. Headlining an already impressive lineup are four beloved stars of the Back to the Future trilogy, including Michael J. Fox, Christopher Lloyd, Lea Thompson and Tom Wilson, celebrating the 40th anniversary of the first installment in the franchise (and 140th anniversary of the 1885 setting of BTTF3!)

And if that weren’t enough, fans of “Smallville” can meet a trio of standouts from that landmark series, including Tom Welling, Michael Rosenbaum and Kristin Kreuk. And "Firefly” standout Alan Tudyk is also part of the initial lineup announcement, a superhero’s start to what will surely be another huge celebration in the Big Easy.

FAN EXPO New Orleans features the biggest and best in pop culture: movies, TV, music, artists, writers, exhibitors, cosplay, with three full days of themed programming to satisfy every fandom.

Michael J. Fox debuted as a professional actor at 15, co-starring in the sitcom “Leo and Me” on CBC. When he was 18, Fox moved to Los Angeles. He had a series of bit parts, including one in “Palmerstown USA” before winning the role of lovable conservative Alex P. Keaton on NBC’s enormously popular “Family Ties” (1982-89). During Fox’s seven years on “Ties,” he earned three Emmy Awards and a Golden Globe, making him one of the country’s most prominent young actors. The five-time Emmy winner (in addition to the three for “Family Ties,” he also won one for “Spin City” and one for a guest role on “Rescue Me”) received an honorary Oscar for his commitment to the campaign for increased Parkinson’s research in 2022.

He may be best known to FAN EXPO fans for his iconic portrayal of “Doc Brown,” but Christopher Lloyd's career includes blockbuster films including The Addams Family and Who Framed Roger Rabbit and classic series like "Taxi" and the animated “Cyberchase.” Some of Lloyd's other top credits include Dennis the Menace, Angels in the Outfield, To Be or Not to Be, Clue and Star Trek III: The Search for Spock.

In addition to playing "Lorraine Baines McFly" alongside Fox, Lea Thompson starred in SpaceCamp, Howard the Duck, Dennis the Menace, Some Kind of Wonderful, All the Right Moves and numerous other hit films. She has guest starred in many TV series and had success with the NBC situation comedy "Caroline in the City" in the late 1990s before starring in several Broadway plays.

Tom Wilson is a character actor, writer and comedian with more than 100 film and TV credits. Wilson burst into the BTTF movies as the now iconic bully “Biff,” his grandson “Griff,” and even his own great grandfather, gunslinger Buford “Mad Dog” Tannen, for which he won the Saturn Award for best supporting actor. He’s also known for roles in “Freaks and Geeks,” "Wing Commander,” April Fool’s Day, “Zach Stone is Gonna Be Famous” and “SpongeBob SquarePants.”

Tom Welling is probably best known for his role as “Clark Kent” in "Smallville.” He has also played “Lt. Marcus Pierce / Cain” in “Lucifer” and “’Karate Rob’ Meltzer” in “Judging Amy” and has had roles in the films Cheaper by the Dozen, The Fog, Draft Day and The Choice.

Kristin Kreuk appeared on "Smallville" as Clark's original love interest, “Lana Lang” and was also featured as “Catherine Chandler” in The CW sci-fi series "Beauty & the Beast" and as “Joanna Hanley” in the CBC legal drama series "Burden of Truth."

Michael Rosenbaum starred in the role of “Lex Luthor” on "Smallville" and most recently as the character “Buddy Dobbs” on the TV Land series "Impastor." He is also known for voicing “Wally West / The Flash” on the popular animated series "Justice League" and "Justice League Unlimited."

Alan Tudyk gained fans’ attention when he starred as wise-cracking "Hoban 'Wash' Washburne" in "Firefly" and Serenity, and later grabbed the “Star Wars” fandom with his portrayal of “K-2SO” in Rogue One. He currently stars as “Harry Vanderspeigle” in “Resident Alien” and also appeared in Wreck it Ralph and 42 and has lent his voice to characters in hits like “American Dad,” “Harley Quinn,” “Transformers: Earthspeak” and “Star vs. the Forces of Evil.”

New Orleans is the first event on the 2025 FAN EXPO HQ calendar; the full schedule is available at fanexpohq.com/home/events/.