The Advocado Press, Inc.

06/03/2025

06/03/2025

Nick Chisholm

Seventh in a series of stories by Tina Jackson of famous people with disabilities.

Nick Chisholm, a bodybuilder and personal trainer, was born in New Zealand in 1973. He was a strong, healthy athlete who played rugby in addition to bodybuilding. In 2000, while playing a rugby game at the age of 27, he suffered a series of seizures leading to a full stroke resulting in massive damage to his brainstem. As he lay in his hospital bed, he was unable to move but alert enough to overhear doctors telling his family he would not survive. That made him angry. Angry enough, in fact, to prove them wrong.

He now lives with locked-in syndrome (LiS), a rare neurological condition where a person is fully conscious but unable to move or speak due to paralysis of all voluntary muscles except for eye movements. It is a coma-like condition, but the person is fully aware of his surroundings yet cannot move. People with LiS can often communicate using eye movements or blinking and their cognitive abilities remain intact.

There are different forms of the condition:
· Classic LiS: Total paralysis except for vertical eye movements and blinking.
· Incomplete LiS: Some limited movement beyond eye control. ·
· Complete LiS: No voluntary movement, including eye movements.

The most common cause is a stroke, but other triggers include traumatic brain injury, infections, or neurological disorders like multiple sclerosis. While there is no cure, assistive technologies and therapies can help improve communication and the quality of life.
Chisholm eventually regained some muscle usage and has become a champion in adaptive bodybuilding and a personal trainer for other disabled people. He cannot speak and communicates by pointing his eyes around a clear plastic board with letters and numbers on it to spell out what he wants to say.

Not only did he build a career in fitness, but he also found love. He met his wife, Nicola, online in 2009, and she moved from England to New Zealand to be with him. After years of trying, they welcomed triplets in 2020.

06/01/2025

We are very excited to present Episode 55 of the Demand and Disrupt Podcast: Belief in the Best Life Possible. In this important episode, Kimberly and Leigh Anne McKingsley, Senior Director of Disability & Justice Initiatives of The Arc of the United States, talk about the death of Victor Perez at the hands of police, what training initiatives are underway to prevent such senseless tragedies in the future, and what help is available to people with disabilities and their family members when it comes to interacting with the criminal justice system.

Kimberly and Leigh Anne McKingsley, Senior Director of Disability & Justice Initiatives of The Arc of the United States, talk about the death of Victor Perez at the hands of police, what training initiatives are underway to prevent such senseless tragedies in the future, and what help is availab

05/30/2025

JUNE DISABILITY AWARENESS DAYS
June 1
– International Children's Day (advocates for children's rights, including those with disabilities)
https://nationaltoday.com/international-childrens-day/

June 1
- National Cancer Survivors Day
On National Cancer Survivors Day, people across the globe will come together to acknowledge cancer survivors, raise awareness of the ongoing challenges cancer survivors face because of their disease, and – most importantly – celebrate.
https://ncsd.org/save-the-date-national-cancer-survivors-day/

June 3
-World Clubfoot Day
he goal of World Clubfoot Day is to raise awareness about clubfoot disability and its prevention using the Ponseti Method, a non-surgical treatment that includes gentle manipulation of the feet followed by the application of plaster casts and temporary bracing.
http://www.ponseti.info/home.html

June 4
World Day for Assistive Technology
The new awareness day, founded tn 2024, aims to draw attention to the importance of assistive technology and the urgent need to improve access to it in many low- and middle-income countries. Assistive products include wheelchairs, eyeglasses, artificial limbs, hearing aids and digital devices such as screen-readers, which enable people to live independent lives – to study, work and enjoy the everyday moments that many of us take for granted.
https://atscalepartnership.org/news/2024/5/22/first-ever-world-day-for-assistive-technology-4-june

June 8
– World Brain Tumor Day
World Brain Tumor Day is to raise awareness and educate people about brain tumors. In 2000, it was first observed by a Leipzig-based non-profit organization, the German Brain Tumor Association. A brain tumor occurs when the cells inside the brain start growing at an abnormal speed which forms a mass of abnormal cells in the brain. The enclosed space inside the skull is limited, and when these abnormal cells start closing in the space, the symptoms are observed.
Https://www.braintumor.org

June 13
Rare Chromosome and Gene Disorder Awareness Day.
C is dedicated to raising awareness about rare genetic conditions that affect individuals and families worldwide. It highlights the unique challenges faced by those with rare chromosome and gene disorders, fosters understanding, and promotes inclusion.
https://www.rarechromo.org

June 15
- Global Accessibility Awareness Day
Global Accessibility Awareness Day (GAAD) is actually observed yearly. It's a day dedicated to raising awareness about digital accessibility and inclusion for people with disabilities. The goal is to encourage conversations, inspire action, and push for more accessible technology.
The GAAD Foundation, launched in 2021, works to integrate accessibility into digital product development as a core requirement. Microsoft has also been actively involved in accessibility initiatives, using AI to break barriers and improve digital inclusion.
https://gaad.com

June 09-15
National Carers Week
Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognize the contribution they make to families and communities throughout the UK. It also helps people who don't think of themselves as having caring responsibilities to identify as carers and access much-needed support.
https://www.carersweek.org/about-carers-week/

June 18
– Autistic Pride Day
(celebrates neurodiversity and the autistic) community
Every June 18, the autism community around the globe marks Autistic Pride Day. This is a day that involves celebrating our differences and honoring the unique perspectives, abilities, and voices of autistic individuals who have for too long been misunderstood and marginalized by society.
https://myautismmind.com/autistic-pride-day/

June 20
-International Nystagmus Awareness Day
Raises awareness about nystagmus, a vision condition affecting eye movement. It brings attention to a condition that can cause severe vision problems among other concerns. The day aims to bring tools, resources, and opportunities for education to the forefront. Depending on the type of nystagmus, treatments, and symptoms.
Nystagmus is a condition characterized by involuntary, repetitive eye movements that can affect vision, depth perception, and balance. These movements may be side to side (horizontal), up and down (vertical), or in a circular motion (rotary). Some people are born with it (congenital nystagmus), while others develop it later in life.
https://nystagmus.org

June 21
– Global MND Awareness Day
**Global MND Awareness Day is observed annually to raise awareness about motor neurone disease (MND), also known as ALS (amyotrophic lateral sclerosis).
# # # Key Aspects of MND Awareness Day:
- **Honoring those affected**: The day acknowledges individuals living with MND and remembers those who have passed.
- **Advocacy and education**: Organizations use the day to educate the public about MND’s impact and push for better care and research funding.
- **Community engagement**: Events, social media campaigns, and fundraising efforts help spread awareness and support ongoing research.
https://www.mndassociation.org

June 23
-International Dravet Syndrome Awareness Day


June 23-29
-Helen Keller Deaf-Blind Awareness Week
Each year, in honor of leading humanitarian, author, and educator Helen Keller, and in recognition of the achievements of people who have both vision and hearing loss, the last week of June is commemorated as DeafBlind Awareness Week. The work of Keller, who was deafblind, “made a big difference in the lives of deafblind.
https://partnersforsight.org/this-is-national-deafblind-awareness-week-commemorating-helen-kellers-birthday-on-june-27th/

June 24-29
-Epilepsy Awareness Week
Epilepsy is a neurological disorder that causes recurrent, unprovoked seizures due to abnormal electrical activity in the brain. It can affect people of all ages and has a wide range of causes, including genetic factors, brain injuries, , and developmental disorders.
Purpose
Education & Advocacy: Organizations and individuals work to dispel myths, reduce stigma, and promote understanding of epilepsy.
• Community Engagement: Schools, workplaces, and local groups host events to spread awareness.
• Fundraising & Support: Many epilepsy charities organize fundraisers to support.
https://epilipsy.com

June 27
National PTSD Awareness Day
National PTSD Awareness Day is observed annually on June 27 to raise awareness about post-traumatic stress disorder (PTSD) and encourage education, support, and advocacy. The day was officially designated in 2010 by the U.S. Senate, following efforts by Senator Kent Conrad to honor a North Dakota National Guard member who tragically took his own life after serving two tours in Iraq.
June is also recognized as PTSD Awareness Month, providing a broader opportunity to spread knowledge about the condition, its symptoms, and available treatments. PTSD can result from experiencing or witnessing traumatic events, and it affects veterans, survivors of violence, accident victims, and many others.
Organizations and advocates use this day to promote mental health resources, encourage open conversations, and reduce stigma surrounding PTSD. If you're interested in learning more or supporting awareness efforts, you can check out resources from the National Center for PTSD and other advocacy groups.
Would you like to explore how PTSD awareness connects to broader advocacy movements? I know you're interested in systemic change and resilience.
https://ptsd.va.gov

June 30
World MS Day
A global initiative to raise awareness about multiple sclerosis (MS), share stories, and advocate for better support and research. The theme for 2024-2026 focuses on diagnosis, aiming to improve early and accurate identification of MS. Multiple sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system, including the brain and spinal cord. It occurs when the immune system mistakenly attacks the protective covering of nerve fibers, called the **myelin sheath**, leading to inflammation and damage. This disrupts communication between the brain and the rest of the body, causing a range of symptoms.
https://worldmsday.org














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05/30/2025

JUNE DISABILITY AWARENESS MONTH CELEBRATIONS

These observances help promote inclusion, accessibility, and advocacy for individuals with disabilities. After each day you will find a website to learn more about the disability and resources.

Cataract Awareness Month
Cataracts are one of the leading causes of blindness and vision impairment in the world. Cataract Awareness Month was established to raise awareness about the condition’s massive global impact. Cataracts is a condition where the lens of the eye becomes cloudy, leading to blurry vision, difficulty seeing at night, and increased sensitivity to glare. Cataracts typically slowly and are most common with aging, but they can also result from injury, certain medical conditions, or prolonged exposure to UV light2. Fortunately, cataract surgery is a safe and effective way to restore vision when they start
https://www.allaboutvision.com/resources/news/cataract-awareness-month/

LGBTQ Pride Month
spotlights LGBTQ voices and celebrates LGBTQ culture, achievements and activism through a series of organized activities, including film festivals, art exhibits, marches, concerts and other programs throughout the month.
https://glaad.org

National Aphasia Awareness Month (raises awareness about aphasia, a language disorder often caused by stroke or brain injury)
It is a language disorder caused by damage to the brain, often due to a stroke or head injury. Aphasia affects a person's ability to speak, understand language, read, and write. The severity and type of aphasia depend on which part of the brain is affected. Some people struggle to find words, while others may speak fluently but with sentences that don't make sense.
https://www.aphasia.org

Scoliosis Awareness Month (focuses on education and support for individuals with scoliosis)
Scoliosis is a condition where the spine curves sideways, forming a C or S shape instead of remaining straight. It can range from mild to severe and is often diagnosed in childhood or adolescence. While the exact cause of most scoliosis cases is unknown, some types are linked to genetic factors, congenital spine abnormalities, or neuromuscular conditions like cerebral palsy.
https://www.scoliosis.org

Migraine and Headache Awareness Month (highlights the impact of migraines and headaches on daily life.
https://www.vyepti.com

Alzheimer’s & Brain Awareness Month
June is Alzheimer’s and Brain Awareness Month, a time dedicated to raising awareness about Alzheimer’s disease and other dementias, as well as promoting brain health. This month, we come together to support those affected, educate the community, and advocate for more research and resources.
https://connect.mayoclinic.org/blog/wellness-rx-jacksonville/newsfeed-post/understanding-alzheimers-and-brain-awareness-month/

Dravet Syndrome Awareness Month
Dravet Syndrome Awareness Month takes place each June in the U.S., and International Dravet Syndrome Awareness Day is observed on June 23rd.
Dravet syndrome is a rare and severe form of epilepsy that begins in infancy, typically within the first year of life. It is caused by a genetic mutation, most commonly in the SCN1A gene, which affects the brain's ability to regulate electrical activity.
By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families.
https://www.finteplahcp.com

05/28/2025

We are reposting Episode 23 of the Demand and Disrupt podcast. In this epsiode, we interviewed Sydney Kessler who became a wheelchair user at age 21. She has since been involved in wheelchair basketball and rock-climbing.

https://demand-and-disrupt.pinecast.co/episode/73f65492/wrap-it-up-.

Adaptive Recreation is growing in popularity. A source of funding for adaptive recreation equipment can be the Appalachian Assistive Technology Loan Fund (AATLF). AATLF can offer loans up to $7,000 at 0% interest. https://aatlf.org/.

The mission of Appalachian Assistive Technology Loan Fund (AATLF) is to provide access to assistive technology (AT) through no-interest loans to individuals with disabilities and older Pennsylvanians and Kentuckians and their families to gain greater independence, productivity, and inclusion in the....

05/24/2025

We have learned that Paul Erway has passed away. Paul was a disability advocate, wheelchair marathoner, devoted husband, and a long-time employee of Superior Van and Mobility here in Louisville. Many of you may have known him. To honor his passing, we are reposting his interview on the Demand and Disrupt podcast which was done late last year.

Kimberly talks with Paul Erway about overcoming not one but two major accidents, competing in wheelchair marathons in all 50 states, adaptive sports, and his work helping people regain their ability to drive with Superior Van & Mobility. Plus, Kimberly and Sam talk about all things Thanksgiving,

05/21/2025

To mark Von Hippel-Lindau Awareness Month, we are posting an excerpt from our book, "A Celebration of Family." The excerpt can be found on our blog here:
https://stand-and-demand.com/kimberlys-story/

(Pictured: Kimberly, the story's author, stands to the left of her huband. Their to children, one boy and one girl, stand in front of them.)

The following is excerpted from the book, “A Celebration of Family: Stories of Parents with Disabilities.” Published in 2021 by the Advocado Press and the Center for Accessible Living Chapter 23 Ki…

05/20/2025

In recognition of National Mental Health Awareness Month, we have posted an excerpt from "A Celebration of Family: Stories of Parents with Disabilities" on our Moving Forward blog. The book was published in 2021 by the Advocado Press and the Center for Accessible Living.

https://stand-and-demand.com/dont-fill-your-head-with-worries-and-what-ifs/

(Pictured: Excerpt author Keith with his wife and young daughter, all smiling broadly.)

The following is excerpted from the book, “A Celebration of Family: Stories of Parents with Disabilities.” Published in 2021 by the Advocado Press and the Center for Accessible Living.   Chapt…

05/19/2025

A new regular feature of the Demand and Disrupt Podcast will be CAL Conversations, a discussion among staff from the Center for Accessible Living on everything disability.

In this first CAL conversation, Kimberly and Carissa talk about the cost of disability. They discuss wheelchairs, kitchen gadgets, and everything in between. Thanks to [Chris Ankin](https://chrisankin.com/) for use of his song, [“Change.”](https://music.apple.com/us/album/change/1618527446?i=161...

05/18/2025

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