Excellent explanation of everything I could ask for if ever given the opportunity.
Welcome to Let Kids Be Kids, Inc., advocacy blog "We All Deserve Better." Our goal is to post relevant information that will spark action,discussion and interaction, creating a catalyst for solutions and ideas to impact the challenges we face in our society. We welcome comments, suggestions and submissions in support of those seeking a voice. "...Courage is not the absence of fear, but rather the judgement that something else is more important than fear..."
Wednesday, September 17, 2025
Tuesday, September 16, 2025
Cuts to Cancer Research - Rachel Maddow video at bottom.
Blood Cancer Unide, the new name of Leukemia & Lymphoma Society (LLS) has heard great concerns from patients, caregivers, volunteers, healthcare professionals, researchers, community organizations and others who are fearful and confused by NIH spending cuts and other policies being proposed and implemented in Washington.
LLS’s work is nonpartisan, but we do engage with the government. LLS works to advance public policies that improve patients’ health, collaborating with lawmakers who support that goal, regardless of their party affiliation. And we speak out when policymakers take actions that threaten patients’ health, regardless of their party affiliation. As an independent, nonpartisan voice for patients, LLS vigorously opposes any actions that jeopardize their lives and well-being.
Our point of view is not driven by politics; it comes from an understanding of and commitment to the needs of patients. LLS has worked across the aisle for more than 70 years to advance its mission and will continue to do so
Below are answers to some of the most common questions we are hearing.
Updated: February 18, 2025
What blood cancer research funding is being cut?
In February 2025, the current Administration suddenly announced immediate cuts to biomedical research funding administered through the National Institutes of Health (NIH) totaling billions of dollars. This includes across-the-board cuts for all current and future blood cancer research supported by NIH.
These sudden funding cuts have been put on hold by the courts—for now.
NIH grants cover “direct” and “indirect” costs. Direct costs are tied to specific projects such as salaries, travel and supplies. Indirect costs cover a portion of grantees’ facilities and administrative costs.
Though they are described as “indirect,” these funds are essential to lifesaving research. As defined by the NIH, they support critical facilities for scientific research, such as buildings and capital improvements, utilities, lab equipment and its maintenance, and other administration and general expenses such as the director’s office, accounting, personnel and other types of expenditures that support the research.
In addition to covering the infrastructure that helps makes the U.S. scientific engine run, indirect costs also cover NIH requirements for tracking dangerous chemicals, hazardous waste disposal and radiation safety.
What would happen if these cuts were to take effect?
It is reasonable to have a conversation about how biomedical research is funded; but it is dangerous to unilaterally make sudden cuts without consulting with organizations that understand the full effect of sudden cuts. A more measured approach would reduce the disruption to ongoing and future medical research and ensure we continue to see the incredible successes we have come to expect from U.S. medical research.
While there have been some slowdowns in funding over the years, historically there has been broad bipartisan support in Congress for NIH funding. The majority of senators and congresspeople recognize the vital role federal funding plays in the health of our nation.
What is NIH’s role in blood cancer research?
NIH is the premier source of government funding for all biomedical and health services research, including for blood cancer. NIH funding can be tracked back to virtually every new drug and medical advancement in recent history.
NIH grants also provide the infrastructure for all pediatric cancer research. Due to their smaller patient populations, pediatric cancer and other rare diseases will likely not be studied without support from NIH.
What part does LLS play in blood cancer research?
As the largest nonprofit funder of blood cancer research, LLS funding complements funding from NIH and other sources. The pharmaceutical industry also plays a key role in funding new drug studies.
The U.S. model of public-private-foundation partnership for medical research has led to some of the most important advancements in cancer care worldwide.
Does LLS get funding from NIH? What exactly is LLS’s role in research funding?
LLS does not receive any federal funding. Over the last 75 years, LLS has invested $1.8 billion in research resulting in blood cancer patients living longer and better lives. LLS currently has more than $250 million in research funding commitments to propel the next generation of blood cancer care. Like NIH, LLS grants also include funds for direct and indirect research costs.
LLS makes independent decisions about its research investments. Our work is led by a group of dedicated scientists, with input from independent advisors, who seek out and fund innovative science for every type of blood cancer.
LLS will keep doing all it can to advance the best research and accelerate better and safer treatments to improve the lives of blood cancer patients and their families, but we cannot do it alone. Ongoing funding from government and other entities is essential to maintaining a steady pace of finding new cures and improving the lives of blood cancer patients and their families.
How is the NIH research funding pause impacting patients?
The sudden announcement of these cuts is causing disruptions in cancer research as scientists cannot be certain of their current and future funding streams. Even temporary cuts can take their toll on patients, on their families, and on science, too.
A permanent reduction in funding could result in less research and fewer new treatments in the future. Some institutions may be able to fill in any gaps left by NIH funding, while others will likely have to scale back or slow their research efforts.
A longer-term problem is that reduced NIH funding may push researchers out of U.S. academia, where they perform vital foundational scientific work. In times when NIH funding is uncertain, researchers look for other career paths. From 2021-2022, because inflation reduced available funding, there was nearly a 10% drop in the number of young scientists employed in post-doctoral academic research positions.
Will these cuts at NIH really matter in the long term? Can’t universities and others fill the funding gap?
Sustained funding from NIH has been the cornerstone of U.S. excellence in biomedical research. Without it, the pace of quality, impactful advances will slow.
Dramatic advances in research have transformed care for many blood cancer patients, but there is so much more to do. Breakthroughs don’t just happen—they are the result of many years of research.
Before a powerful new therapy reaches patients, it undergoes intensive scientific inquiry, analysis, testing and validation. The only way to rapidly achieve better cancer treatments is through consistent, robust funding for science – through the public sector, academia, industry, and nonprofits.
If funding is frozen, why am I still seeing new drugs being approved by the FDA?
The treatments being approved by the FDA now likely benefited from NIH (and often LLS) research funding years ago. It can take 10 to 15 years or more to bring a new drug to market.
For example, a new type of drug called a menin inhibitor was approved in late 2024 to treat people with acute myeloid leukemia. LLS funded research in the early 2000s that discovered menin’s role in the devastating behavior of AML. Identifying these new connections allows for new kinds of drugs to be developed that may work for patients who have not responded to existing drugs or that work better for all patients.
LLS and NIH committed funding over the next two decades to develop the first compound to inhibit menin, and to do the years of scientific work needed to make the inhibitor potent and safe for use in patients.
Today, thanks to the long-term investments of LLS, NIH and others, one menin inhibitor is available, another is on the way, and work is already underway on next generation menin-based treatments.
What programs does LLS have to fund research that is improving the lives of blood cancer patients?
Our comprehensive research strategy is designed to generate near team impact for blood cancer patients by supporting drugs that are close to FDA approval through the LLS Therapy Acceleration Program. LLS also focuses funding on seeding the research pipeline through our Academic Grants to keep innovative therapies coming in the future.
LLS leads two master clinical trials. The LLS Pediatric Acute Leukemia Master Clinical Trial (PedAL) is helping to speed up the process of finding new treatments for blood cancer in kids. LLS’s Beat AML® Master Clinical Trial is transforming treatment for adults with acute leukemia. Beat AML has already shown improved survival for patients enrolled in Beat AML compared to those receiving standard chemotherapy.
The LLS Equity in Access research program provides funding to health services researchers who are working to uncover and address the social, economic, and environmental disadvantages that keep blood cancer patients and survivors from accessing the high-quality treatment and care they need throughout their lives.
What is LLS doing to address potential cuts to NIH funding?
Through our Office of Public Policy, LLS is encouraging the Administration to partner with patients, clinicians, and researchers to understand and appreciate the full impact that its cuts on funding have on patients and healthcare infrastructure.
To address the threat of funding cuts, LLS partners closely with partner organizations across the cancer community as a part of the One Voice Against Cancer (OVAC) coalition. Through OVAC, LLS will engage with lawmakers and push back quickly – as we always have – if needed.
LLS is also empowering those who care about this issue by providing opportunities to make their voices heard. Please see below for more information.
How can I help/what can I do?
LLS is vigorously defending against actions that threaten the lives and well-being of cancer patients, like cuts to the National Institutes of Health (NIH) and proposals to cut Medicaid, which provides healthcare to more than 70 million Americans, including more than 37 million children.
But we are also focused on ensuring lawmakers drive forward our other priorities, like the Accelerating Kids’ Access to Care Act and bills to support the research and development of pediatric cancer treatments and cures.
As we continue this work, your voices can make an enormous difference.
Right now, please send a message to your members of Congress calling on them to publicly urge the Administration to rescind these devastating cuts. It only takes two clicks (or two taps on your phone).
Sunday, September 14, 2025
Saturday, September 13, 2025
“Meet some unforgettable people who may well change your life!” - Review of Listen, Listen to My Heart's Song.
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| Free on Kindle Unlimited |
The review follows these introductory satements.
****
“Meet some unforgettable people who may well change your life!”
“An inspirational book that makes you want to be a better person.” Pikasho Deka
“This book showcases hope, kindness, and perseverance of human beings.”
"...Listen, Listen to My Heart’s Song is a touching compilation of snippets of life, love, happiness, loss, and the invaluable lessons to be learned as we navigate through life. The author tells the stories of others with wit, charisma, and with great care. Each story is conveyed with clever simplicity, allowing for the fullness of the message to shine through. The reader is encouraged to connect with each story and to reflect upon similar themes in their own lives, providing the right blend of enjoyment of others’ experiences and hearkening back to one’s own. Spanning the country and crossing the globe, we meet people from all walks of life in this book, learning and appreciating pieces of their lives as we go..."
“Listen, Listen to My Heart’s Song” celebrates the lives, and stories, of people I have been fortunate to know, if only for a flash of time. I have been lucky to live in several countries and travel a great deal of the world, meeting a wide range of exciting people willing to share their stories.
An African proverb says that: “When an old man dies, a library burns.”
When I first heard that, I was determined to share some of the stories people gently shared with me.
Read about a priest fighting his challenges as he reaches out to those with AIDS.
Meet Bronka, a survivor of Auschwitz and Buna who inspires all who had the opportunity to meet her.
This book is my thanks to them for their time with me.
Net Profits will be donated to the Leukemia & Lymphoma Society, The American Cancer Society, the Washington Talking Book & Braille Library, and the Woodland Park Zoo.
"...I appreciate the desire to tell others’ stories in Listen, Listen to My Heart’s Song by M. Barrett Miller. It provides both contributor and reader the chance to connect, albeit virtually and across the distance of time and place, and to enjoy the commonalities of humanity. The way the stories are told sets the tone for the book, making way for a respectful and pleasant look at lives all at once the same and yet very different from our own. The author is clearly well-traveled and well-connected with people he has known, and, in many instances, helped in one way or another. The author’s generous heart for humankind is the driving force behind the amazing content and touching stories. Listen, Listen to My Heart’s Song is the perfect remedy to a bad day, and the ideal pick-me-up when life feels overwhelming. Well done, Mr. Miller."
****
Reader's Favorite Book Reviews & Award Contests
Reviewed by Natalie Soine for Readers' Favorite
Listen, Listen to My Heart's Song is a book of stories from various
people collected by author M. Barrett Miller, a graduate of Seattle
University and the University of San Francisco
.
Dealing with a venomous snake, making a “bear away” and learning to sacrifice during challenging times are some of the lessons shared in the stories.
The stories are educational and inspire people to become more involved with
welfare organizations, projects, and any programs focused on
helping those in need.
Listen, Listen to My Heart's Song is an absolute delight to read, filled with tales of adversity, survival, and courage.
Author M. Barrett Miller does a fantastic job of capturing each person’s story
and their contributions to society.
The variety of characters is interesting and easy to relate to, including African Americans,
Native Americans, and many more people from diverse cultures and
backgrounds.
I especially enjoyed learning about the various charities supported by the sale of this book, i.e. The Leukemia & Lymphoma Society, The American Cancer Society, the Washington
Talking Book & Braille Library, and the Woodland Park Zoo.
The book is well-written and a smooth comfortable read – highly
recommended for all adults and children. An inspirational journey that teaches people to follow their dreams and never give up.
****
Appearance: 4
The appearance of a book can make a significant impact on the
experience of a reader, whose enjoyment is often enhanced by an
enticing cover, an intriguing table of contents, interesting chapter
headings, and when possible, eye-catching illustrations.
Plot: 5
The characters of a book should be well defined with strengths and
flaws, and while they do not have to be likable, the reader does
have to be able to form a connection with them. The tone should be
consistent, the theme should be clear, and the plot should be
original or told from a unique perspective. For informative books --
those without plot and characters--this rating refers primarily to
your concept and how well you presented it.Development:
Development 5
Development refers to how effectively you told your story or
discussed your topic. The dialogue should be realistic, the
descriptions should be vivid, and the material should be concise
and coherent. Organization is also a key factor, especially for
informative books -- those without plot and characters. The order in
which you tell your story or explain your topic and how smoothly it
flows can have a huge impact on the reader's understanding and
enjoyment of the material.
Formatting: 5
Formatting is the single most overlooked area by authors. The way
in which you describe scenes, display dialogue, and shift point of
view can make or break your story. In addition, excessive
grammatical errors and typos can give your book an amateurish
feel and even put off readers completely.
Marketability: 5
Marketability refers to how effectively you wrote your book for your
target audience. Authors may include content that is above or
below the understanding of their target reader, or include concepts,
opinions or language that can accidentally confuse or alienate some
readers. Although by its nature this rating is very subjective, a very
low rating here and poor reviews may indicate an issue with your
book in this area.
Overall Opinion: 5
The overall starred rating takes into account all these elements and
describes the overall reading experience of your reviewer. This is
the official Readers' Favorite review rating for your book.
Monday, September 8, 2025
Hidden Disabilities - Be Open to Everyone, Because Everyone is Fighting Silent Battles We Know Nothing About...
Most people picture disability as something visible: a wheelchair rolling down the street, a cane tapping across the sidewalk, or a prosthetic limb. But that is only the surface. Beneath the radar are hidden disabilities, conditions that do not show themselves at first glance yet shape people’s lives just as deeply as visible ones.
Dyslexia. ADHD. Lupus. Fibromyalgia. Depression. Stuttering. Parkinson’s. PTSD. These are the realities that live in silence, often dismissed because you cannot see them. They are the invisible weight people carry while working, learning, and just trying to live with dignity.
And while the rest of the world is quick to say, “You look fine,” the truth is that looks do not tell the story.
What Are Hidden Disabilities?
A hidden disability is any physical, neurological, or mental health condition that affects how you live or work but is not obvious from the outside.
Some examples include:
Learning differences: dyslexia, dysgraphia, dyspraxia
Neurological conditions: Parkinson’s, epilepsy, multiple sclerosis
Chronic illnesses: lupus, diabetes, Addison’s disease, Sjögren’s syndrome, fibromyalgia
Mental health challenges: depression, anxiety, PTSD, bipolar disorder
Speech differences: stuttering
What makes them hidden is not that they are small or unimportant. It is that people do not see them unless you speak up. Sometimes not even then.
The Double Burden
Living with a hidden disability means carrying two loads. The first is the condition itself: the fatigue, the pain, the meds, the endless appointments, the unpredictability. The second is the burden of being misunderstood.
Teachers may call you lazy. Bosses may think you are unreliable. Friends may brush off your fatigue with “just push through.” That skepticism can hurt more than the condition itself.
The invisibility creates a constant dilemma. Do you explain yourself every time, or do you keep quiet? Do you hide it to avoid pity, or disclose it and risk disbelief? That is the exhausting tightrope people with hidden disabilities walk daily.
Famous People Living With Hidden Disabilities
Hidden disabilities do not respect status. They are found in Hollywood, in stadiums, in the White House, and even on stage at sold-out arenas. These figures went public and proved that success and disability can coexist.
Actors and Entertainers
Daniel Radcliffe – Dyspraxia. Coordination is tough, yet he carried Harry Potter through eight films.
Whoopi Goldberg – Dyslexia. Labeled “dumb” in school, she became an EGOT winner.
Keira Knightley – Dyslexia. Learned by listening, turned determination into a career.
Orlando Bloom – Dyslexia. Found workarounds through acting and memorization.
Ryan Gosling – Dyslexia. Homeschooling gave him space to learn his own way.
Cher – Dyslexia. School was rough, music was not.
Steven Spielberg – Dyslexia. Late diagnosis, early genius.
Henry Winkler – Dyslexia. Best known as “The Fonz,” Winkler did not get diagnosed until adulthood. He later co-wrote children’s books featuring characters with learning differences.
Michael J. Fox – Parkinson’s disease. Diagnosed young, went public in 1998, created a foundation that leads in Parkinson’s research.
Selma Blair – Multiple sclerosis. Revealed her diagnosis in 2018 and became an advocate by showing both her struggles and her strength.
Howie Mandel – OCD and ADHD. The comedian and judge has lived openly with obsessive-compulsive disorder and attention issues, using humor to fight stigma.
Emilia Clarke – Brain aneurysm aftermath. Clarke survived two aneurysms and has spoken about memory and language struggles afterward, hidden challenges for an actor.
Bella Hadid – Chronic Lyme disease. Lives with fatigue, brain fog, and pain from long-term Lyme, often invisible but disabling.
Jessie J – Wolf-Parkinson-White Syndrome. A heart condition causing irregular rhythms. She also suffered a minor stroke but continues to perform.
Morgan Freeman – Fibromyalgia. Developed after a car accident. Manages chronic pain not visible to audiences.
Musicians
Justin Timberlake – OCD and ADHD. Routines and music helped him balance both.
Solange Knowles – ADHD. Once thought it was just energy, now embraces it.
Adam Levine – ADHD. Spokesperson for living with ADHD as an adult.
Chris Martin (Coldplay) – Tinnitus. Constant ringing in his ears, turned it into advocacy.
Selena Gomez – Lupus. Faced exhaustion, chronic pain, and a kidney transplant, yet continues to create.
Lady Gaga – Fibromyalgia. Chronic pain, made public in her documentary Five Foot Two.
Demi Lovato – Bipolar disorder. Speaks openly about stigma and advocates for mental health.
Nick Jonas – Type 1 diabetes. Diagnosed at 13, he manages his music and acting career while carefully controlling his blood sugar.
Writers, Thinkers, and Innovators
Agatha Christie – Dysgraphia. Dictated her books because handwriting was a struggle.
Richard Branson – Dyslexia. Built the Virgin empire by focusing on vision instead of detail.
Elon Musk – Autism spectrum (Asperger’s). Revealed during a Saturday Night Live appearance. He has said that being on the spectrum shapes how he approaches problem-solving, fueling his work at Tesla and SpaceX.
Anderson Cooper – Dyslexia. Fought through school struggles, now one of the most trusted journalists.
Athletes
Simone Biles – ADHD. Refused to hide her diagnosis and kept winning gold.
Michael Phelps – ADHD. Swimming gave him focus and turned restlessness into discipline.
Magic Johnson – HIV. More than 30 years after his diagnosis, still thriving and leading.
Venus Williams – Sjögren’s syndrome. Battles fatigue but continues to compete.
Public Figures and Media
President John F. Kennedy – Addison’s disease. Rare adrenal disorder, hidden during his presidency.
President Joe Biden – Stutter. Practiced speeches in the mirror, now leads the country.
Prince Harry – Anxiety and PTSD. His openness has encouraged others to talk about trauma.
Robin Williams – Depression and Lewy body dementia. His hidden struggles showed how even joy can mask deep pain.
Stephanie Ruhle – Dyslexia. The MSNBC anchor overcame reading challenges to build a successful career in finance and journalism.
Wendy Williams – Graves’ disease. An autoimmune condition that causes fatigue, anxiety, and brain fog.
Gina Rodriguez – Hashimoto’s disease. A thyroid disorder that causes exhaustion and cognitive fog, which she has spoken about.
Sarah Hyland – Kidney dysplasia. Born with malformed kidneys and has undergone multiple transplants while continuing to act.
By the Numbers: Hidden Disabilities Around the World
Sometimes the clearest way to see the scope of hidden disabilities is through the numbers. Behind every statistic is a person living with a condition that others may never notice.
Learning Differences
Dyslexia: affects about 1 in 10 people worldwide, up to 80 percent of people with learning disabilities in the U.S.
Dysgraphia: estimates suggest 5 to 20 percent of students struggle with it.
Dyspraxia: about 5 to 6 percent of children, many carrying it into adulthood.
Neurological Conditions
Parkinson’s disease: more than 10 million people worldwide, 90,000 new U.S. cases each year.
Multiple sclerosis: 2.9 million worldwide, women nearly three times more affected than men.
Epilepsy: 50 million worldwide, with seizures that are not always visible.
Chronic Illnesses
Lupus: 5 million people worldwide, 90 percent are women.
Fibromyalgia: 2 to 4 percent of the global population, mostly women.
Diabetes: 422 million worldwide, requires daily management though often invisible.
Addison’s disease: rare, about 1 in 100,000 people.
Sjögren’s syndrome: 4 million Americans, 90 percent women.
Graves’ disease: about 1 in 200 people in the U.S., more common in women.
Hashimoto’s disease: affects about 5 percent of the U.S. population.
Kidney dysplasia: occurs in about 1 in 4,000 births.
Mental Health and Speech
ADHD: affects 8 to 10 percent of children and about 4 percent of adults.
OCD: around 2 percent of the global population will experience it.
Bipolar disorder: 2.8 percent of U.S. adults each year.
PTSD: 5 percent of U.S. adults in a given year, higher among veterans.
Depression: 280 million people worldwide, leading cause of disability.
Anxiety disorders: 300 million worldwide, the most common mental health condition.
Stuttering: 1 percent of the global population, millions live with it lifelong.
HIV
39 million people worldwide live with HIV today. With treatment, it is a manageable chronic condition, but stigma remains.
Everyday People with Hidden Disabilities
It is easy to look at celebrities and politicians, but hidden disabilities live next door too. Think about the cashier who takes breaks more often than others because of diabetes. The student who reads slower because words scramble on the page. The parent who cancels plans at the last minute because lupus has drained every ounce of energy. The veteran who jumps at loud noises because of PTSD.
They do not get magazine covers. They get judgment, raised eyebrows, or whispered comments. They hear “lazy,” “dramatic,” or “making excuses.” Yet they keep showing up.
What Society Gets Wrong
The world often divides disability into visible and invisible. The visible is treated as legitimate, while the invisible is treated as suspicious. That mindset is dangerous.
Employers ask for “proof” before making accommodations. Schools delay testing because “the child looks fine.” Doctors dismiss symptoms as stress or attention seeking. Even friends and family doubt what they cannot see.
This disbelief compounds the disability. It creates isolation, guilt, and in many cases, shame. Hidden disabilities are real whether people choose to believe in them or not.
Why This Matters
This list is not trivia. It is proof. Hidden disabilities do not block success, but stigma and disbelief often do. Radcliffe and Gosling turned dyslexia into motivation. Michael J. Fox turned Parkinson’s into a global mission. Lady Gaga turned fibromyalgia into a rallying cry. Elon Musk turned his autism spectrum diagnosis into innovation.
For every celebrity who goes public, there are millions who live in silence, facing school systems that do not accommodate and jobs that refuse to adjust. That gap between recognition and reality is the true injustice.
My Take
The biggest myth is that if you cannot see it, it must not be real. But dyslexia is not laziness. ADHD is not irresponsibility. A stutter is not incompetence. Lupus is not “just being tired.” Parkinson’s is not weakness. Chronic pain is not dramatics. Autism is not a lack of ability.
Invisibility can cut both ways. It saves you from pity but forces you to constantly prove your reality. That takes a toll.
I have seen how quickly people rush to dismiss hidden disabilities. The same people who hold the door open for a wheelchair user might laugh off someone who admits they live with bipolar disorder. Until that changes, we will never achieve true equality.
Where We Go From Here
Hidden disabilities are everywhere: in classrooms, offices, stadiums, and even the Oval Office. The next time someone shares their story, do not say “But you look fine.” A better response is “How can I support you?”
That shift, from doubt to understanding, is how we build a society where hidden does not mean ignored.
Editor’s Note
This subject is not just theory for me. I was born with cerebral palsy and use a wheelchair every day. Some people notice my disability the second I roll into a room. What they do not see are the hidden parts: the muscle spasms that flare up without warning, the exhaustion that hits after a simple outing, or the constant fight to find reliable care.
That is why I write about disability the way I do. Whether visible or invisible, every disability is real. We should not have to prove it over and over.
— Daniel Carvajal
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