A Christmas story for the NYC Gothamist magazine
The magazine called the Gothamist ( a New York City magazine ) has invited Martha Harlam to write a story /column / tip about Ataxia. The National Ataxia Foundation and FARA (Friedrichs Ataxia Research Alliance ) is asking the visitors the readers of the Gothamist magazine, who see the massive tree for the Christmas holiday season to fundraise for Ataxia. Everyone can be a champion supporter of Ataxia and Ataxia research . 🙏 you can help us !
This is my story!
Ever since I was a little kid living in Merrick NY on Long Island, my family went to ice skate at the skating rink of Rockefeller center in New York City at Christmas time. Since I live in Spain and have cerebellar ataxia – now being too old and having lost my balance to Ataxia – it is highly unlikely that I will be coming to NYC to either visit or ice skate. But those memories are very precious to me. My mother and father were diehard New Yorkers.
Being an American citizen living in Spain , makes me long for the New York Christmas holiday experience. The smells of roasted chestnuts in the NYC streets, the Christmas lights, the Christmas show at Radio City Music Hall, the New York City shopping widows at Macy’s , the Nutcracker of NYC ballet at Lincoln Center or just drinking cocoa to get warm at a Howard Johnson’s restaurant – God how I miss it !
Not being able to travel due to the COVID-19 pandemic and my limitations in movement due to Ataxia – I have to settle just for making my Ataxia awareness campaign come to life online.
Website =. https://miracle-answer.org
You can have all your readers at the Gothamist donate to the cause of Ataxia research. Take up a collection for any of the Ataxia charities we work with. ( see the website ) This neurological non cure able disease Ataxia affects children and young adults alike. Anyone can help and donate!
So if Santa 🤶 would ask this now grownup kid to whisper in his ear what she wants for Christmas – her answer would be: Everyone should donate to Ataxia research! Website= https://miracle-answer.org
Thank you for your help and understanding. Happy Holiday. Martha Harlam
Shifting Your Perspective With Gratitude Can Change Everything
Hello and happy holidays! Thanksgiving is quickly approaching, and this time of year can be so hectic that it’s often over before we have time to process it. I hope you are able to carve out a few moments during this season to ponder gratitude and to focus on some of the positive things in your life that you are thankful for.
Honestly, I can say that gratitude was probably the last thing I felt a few years ago when my son was diagnosed with Friedreich’s ataxia. Initially, I felt sad, lonely, and hopeless.
Although time has passed, I still sometimes feel those emotions when I let myself think too far into the future, with all of its unknowns. I’ve found that a shift in perspective can bring me out of heavy thoughts and help me focus on my present reality instead.
Matthew Schumann, a psychiatrist at the Mayo Clinic, writes that “feeling thankful can improve sleep, mood and immunity. Gratitude can also decrease depression, anxiety, difficulties with chronic pain and risk of disease.” In line with what studies have shown, when I intentionally replace my worries with thoughts of gratitude, my anxiety tends to decrease.
Based on my perspective, the future can either be dark and scary or filled with hope. I can choose to celebrate the moments I get to spend with my son and the rest of my family, or I can live in fear of what the future may bring. As Oprah once said, “Breathe. Let go. And remind yourself that this very moment is the only one you know you have for sure.”
I recognize that for some of you out there, your present reality may be very challenging. Gratitude can take us a long way, but sometimes we all need help to find it. If your life as a caregiver feels heavy and full of despair, may I encourage you to reach out to someone? It may be a fellow caregiver, a friend, or a counselor — anyone that can give you a safe space to be honest about how hard your current circumstances are.
We all need a community, a group of people who understand what we are experiencing and who can be there to share the joys and the sorrows. One of my favorite song lyrics is from an artist named Sara Groves. While she is referring to marriage in her song “Twice as Good,” I think the lyrics can apply to any relationship: “Life with you is half as hard and twice as good.”
Life is full of beautiful, messy moments. A perspective shift can help us find ways to be grateful, even in the midst of hard days and an unknown future.
This holiday season, may the family and friends around us help us to see the present for what it truly is: something to be thankful for.
by Katie Griffith | November 19, 2021 (Friedreich’s Ataxia News)
15 famous people with rare diseases
All the following 15 famous people mentioned below have or had a rare diseases that have affected their lives! Rare diseases are described by the NHI neurological and brain disorder institute .
- George Clooney – Bell’s Palsy.
- Angelina Jolie. – Bell’s Palsy.
- Pierce Bronson. – Bell’s Palsey.
- CHER. – Epstein Barr Virus
- Gigi Habid. – Lyme disease
- Harry Jonas. – Diabetes Type 1
- Selena Gomez. – Lupus
- Kim Kardashian. – Skin Psoriasis
- Gerard Butler. – Tinnitus
- Jennifer Esposito. – Celiac Disease
- Jimmy Kimmel – Narcolepsy
- Missey Elliot – Graves Disease
- Venus Willams. – Sjogrens Syndrome
- Bill Ney. – Ataxia
- Jennifer Hudson. – Obesity
So many people have experienced in their lives a rare disease . And yet they have mastered their lives in spite of the rare disease. The NIS of neurological disorders says that rare disease disorder affects 25-30 million people living in the USA. Worldwide there are 7000 + Rare Diseases! Only 400 + have treatments or cures . Contact :
NORD – a charity for RARE DISEASES – USA ). If someone is advocating for your rare disease – read about their story and support their advocacy efforts and campaign !
Congressionally Directed Medical Research Programs
Hereditary Ataxia research is being developed in by the USA/FARA and NAF research programs. As a result of this research much of the funding for Hereditary Ataxia is being added to the list of Ataxia diseases. Hereditary Ataxia will now be included in the $ 17.8 billion funding since its inception in 1992. This stopgap funding is a real boost for the Ataxia community and Ataxia research in the USA for people living with Ataxia worldwide THERE IS HOPE!
Armchair Revolutionary Army !
We are disabled, some are old, some have mobility issues – but we use our iPads and the internet to inspire change. We are active , getting our messages out and pushing people to become active with us . You can think with us to move things forward. You should not belittle us or question our actions or motives.
Awe……. we ( in the best way we can ) aren’t sweet or nice ! We are all active in our own way. In my case I encourage people to support Ataxia and other rare diseases. That’s all ! So when you choose to champion a good cause – do it all for the right reasons.
We can all support the new documentary called “Rare” coming out.
A Rare Disease Fight !
Ever heard of SALLE ? Jessica Klein-Folglio is fighting for her son Ben to cope with any information she can get about the disease called SALLE! This autoimmune disease was only discovered in 1979 in Lapland. To fight the disease and raise funds to combat it the crowdfunding organization kickstart is looking to raise $45,000 to produce and show a new documentary film called RARE!
Ben is a Star Foundation highlighted child for rare diseases in the USA. The UK rare disease charity called “ Find a Cure “ has been asked to join in the fight against SALLE disease in Europe. This film documentary will shine a light for research and awareness into rare diseases.
The future is bright for Ataxia research
Dr Prof Sergi Mirkin is the head researcher at the Biology center of Tufts University in Medford Boston Massachusetts. His research into the genetic DNA structure of Ataxia genes has given new found hope for people living with Ataxia.
This is a beginning to treatment and a cure for Ataxia. It is possible that something will be found in the future research efforts of Ataxia .
Bravo Prof. Sergei Mirkin
For over 40 years I have had Ataxia. Spino Cerebellar typ 6 to be exact ! With your help a treatment or cure for Ataxia will be found in my lifetime. It is my hope that people with the disease have hope for the future.
My website is raising awareness and funds for Ataxia. Your findings will be added to the information website. https://miracle-answer.org
Please contact me regarding anything you may want to be announced. Thank you for your work on Ataxia. Because of your work people with Ataxia have new hope!
Kind regards. Martha Harlam
Dealing with late stage Ataxia !
Ever since I was diagnosed with Ataxia my life changed slowly forever. Even though the progression was slowed down, in the end the outcome was the same. Unfortunately the progression of the disease overtook the then present state of professional and personal state of the situation. With no cure or valid treatment, I was forced to find ways to cope with the current difficulties and deficiencies of the disease.
Now that I am totally affected by Ataxia, at age 70, it is depressing and difficult to try to find ways to be personally and professionally RELEVANT . The late stages of Ataxia present a very different need to adapt to the daily routine created by the disabilities. Everyone is affected differently but the need to cope and adapt to each personal situation remains.
Technology helps us to cope , with boredom, beyond the daily issues facing our disability world. The world of disability is one that gives us a felling of isolation. We need to go beyond our own limitations. You can read or write or start a website or blog with others. The art of sharing in our day and age has never been easier. The sharing ability of social media makes it possible to reach friends, family and sheer strangers today. The use of the iPad and the internet make it possible to remain RELEVANT!
I call it the Armchair Revolution .
Most people living with Ataxia still have a message, cause or story to tell. The lack of mobility is no longer an excuse! Even just sitting in an ARMCHAIR – un Mobil – we can still keep our brains active. Speak with others and develop how you can remain RELEVANT!
Cleancult Plastic Solutions
Cleancult is a company fighting the plastic problem in the cleaning industry. The products we use daily to clean our lives are enclosed in plastic bottles or plastic pots. Using the products of Cleancult you refill the products you use with natural products with plastic-less containers. By doing this you are personally reducing the harmful plastic buildup in our world. The plastic-less containers and refill possibilities are helping to make a Greener world !
The company Cleancult is focusing away from human behavior. This gives people the chance to choose for themselves , by using this green solution, to contribute to the plastic buildup consuming our lives.
Awakening Health – The future of healthcare.
Mr. David Lake created the robotic nurse GRACE to enhance the medical assistance possibilities in healthcare . Together with robotics partner David Hanson the future of Ataxia research is very hopeful. Mass production of the robot will lower the cost of the invention for hospitals, care homes and individuals.
Leaving a legacy for Ataxia
I have put many personal resources and hope into the search for a cure for Ataxia. Over the years my attention to the research work of Ataxia UK, the National Ataxia Foundation of Minnesota USA, FARA and FEDES in Spain regarding genetic studies and treatments have been extensive. But after 40 years there is still no cure.
Maybe we need to go a whole new route! I have been recently asking myself the question “ can Robotics, AI technologies be the new solution to healthcare and the future of Ataxia “ . Many people are coming together to answer this question. Can all these components find a solution to the needs of the Ataxia community ?
I and the Solution Project have chosen to involve Dr. David Hanson of Hanson robotics Hong Kong, David Lake of Awakening Health Ltd – Canada, Dr Ben Goetzel of AI Global network , Melissa Beiner of Biopharma USA , RIKEN Robotics research in Japan and people involved with robotics and Ataxia throughout Spain. These people are taking up the responsibility to help Ataxia and elderly care homes throughout the world.
On a bigger scale the Amazon Care project and Elon Musk with his new interest In humanoids and robotics are being included in the research to make their contributions to the healthcare sector. Perhaps all these efforts in robotics and AI technologies will contribute and augment the ongoing research we have in the fight against Ataxia.
Giving Ataxia assistance & hope through robotics!
Today the Hanson robotics company and the Awakening Health company have given elderly care patients and Ataxia patients everywhere a reason to have hope and nursing assistance. We all have hope for the future of Ataxia Care in late stages of the disease will be helped beyond just genetic research looking for a cure.
Enter Grace the nursing android robot ! She has the ability to take your temperature, speak to you, give you medication , assist your real nurse and much more! This is a new exciting future for the daily needs of people living in care homes with Ataxia.
For younger Ataxia patients with SCA types research using robotics are contributing to mobility and gait adjustment. Electro skeleton robotics are helping Ataxia patients find the firm footing they need along with grab and touch facility to increase their ability to increase their independence.
The Solution Project has introduced these companies with a futuristic approach to Ataxia research. The USA Biopharma company research department , National Ataxia Foundation and the research departments of Ataxia UK have started to look into working together with these companies in the hope of adding their knowledge to Ataxia research.
In just one year since the first robot of Hanson robotics came out ( Sophia ) the Awakening Health company will increase healthcare possibilities in 2022 by mass production of these nursing robots. Ataxia has a real reason to rejoice!
Leaving a Legacy for Ataxia?
The Solution Project / Martha Harlam on August 23 rd wrote to the director of Research at Biopharma and the robotics company Robert Hanson . Both companies have a willingness to work together on behalf of the research studies for Ataxia. It is a mutual mission to join their knowledge together and make a contribution to the future for Ataxia patients all over the world.
The time has come for me to turn my efforts to the future of Ataxia and the next generation. At age 70 the current treatment and clinical trials won’t benefit my situation. But together Biopharma and Hanson robotics / AI technologies will help to find a way to conquer this debilitating disease- Ataxia !
Bringing people Together
The Biopharma head researcher, Mellisa Beiner, has been brought together by the Solution Project/ Martha Harlam with Dr. Robert Hanson of Hanson robotics to develop how they can work together on a solution to Spino Cerebellar Ataxia. Robotics may be a welcome addition to the clinical trials for SCA ( Spino cerebellar ataxia ).
Teaching an Old Dog – New Tricks
Together with the National Ataxia Foundation research grant division and Hanson Robotics Technologies – Martha Harlam of the Solution Project will submit a letter of intent for funding for late stage Ataxia. This will give Ataxia patients hope that new technologies will give Ataxia patients a daily chance to surpass just waiting for a cure.
The Hanson Robotics and Technology Engineering company of Hong Kong has a chance to contribute to making the lives of Ataxia people better. The pro-active approach of robotics and new technologies in the late stages of Ataxia in elderly patients will contribute to cardio compilations regarding hereditary Ataxia. It is a known fact that older Ataxia patients can experience heart failure.
The robotics and technologies of the Hanson Robotic company will work together with the Solution Project / Martha Harlam and colleagues worldwide by submitting a detailed explanation of their letter of intent to the funding board of the National Ataxia Foundation.
Thank you for reaching out. I would love to explore whether our technology can help in the research and possible therapy for Ataxia.
Kindly meet David Lake, the CEO of Awakening Health Ltd–our partner in deploying our technologies for healthcare uses. Hanson Robotics would be interested in supporting your work, in conjunction with Awakening Health Ltd.
David Hanson, Ph.D.
Method to my madness
I was thinking what can I do on lockdown during a coronavirus time ? This virus has put a damper on creativity. However for me it was a way to get creative and go virtual! The emails, zoom chats and phone calls and a great website all gave me access to the world.
As a Website maker – putting everything on a website gives you the capability of reaching a wider audience faster than a book is quite intriguing. My webmaster and web – designer have given my storytelling and information abilities tremendous avenues to grow. This ability is far more satisfying to me than just writing a book. Over time my message and ideas are able to expand and grow.
An Event maker – The ability for my ideas to flourish was to get as many people as possible involved in my ideas . Out of just providing information and promoting awareness about various social issues the events listed on the website provide a real ability to engage with the issue at hand. But I made the spitballs and others fired them. If people want to engage in the fundraising events they can! With others in the business, charity and media area my ideas get exposure through the website. Anyone can join with no strings attached.
Charities and giving !
It was very necessary to promote a platform for social charities. My efforts are in no way self serving or monetarily profitably motivated. The idea to promote these issues is not new. It keeps me busy – so why do it? Being disabled and now 70 years old it gives me the ability, with limited resources , the chance to be socially engaged and intellectually active. The Solution Project has given me the chance to engage with all sorts of people who can even push my views on things to an unimaginable scale. If this website project gives just one person a boost, then I’ve accomplished my ultimate goal. If people want to get involved and donate to a charity – they can and they have a choice to help. The possibility is there. No one is twisting their arms to donate.
The Solution Project and my website will go on for a while. It challenges apathy and cynicism regarding many issues. Anyone can join in the events or get access to the information and awareness about issues facing all of our daily lives . We can all decide to be a part of the solution – or not !
Blog story behind the Solution Project
The Solution Project grew out of the personal need to share my everyday concerns about issues facing our daily lives. Taking registered charities to promote and support there were many issues to choose. The issues of rare disease R&D, human Trafficking, Ocean and river clean up projects, forest conservation, wildlife habitat protection , women and climate change, micro financing, gender equality, COVID-19 employment relief , Cancer research, medical civil help, cultural-mental health and LGBTQE rights.
Sure this is a heavy lift ! But the situation of all these issues needs a platform. That is how the Solution Project came into being. There are 15 solutions to choose from. It is my hope that my website and the Solution Project events can attract enough support and awareness to motivate people to join us in the fight against apathy. Together we can change mindset and be a part of the solution.
Like MJ sang =
“ I’m talkin ‘bout the man in the middle. I’m asking him to change his ways ! If you want to make the world a better place, take a look at yourself and make that CHANGE! “