Thank you for your email and your invitation to join in this event!
Since 1986-87 my family ( mother and sister and myself ) have worked with Dr. Perlman in L.A. . As of today and all the contact my family has had with Dr. Perlman she and others have found no cure for olivopontocerebellar ataxia.
I’m now 70 years old! Living with Ataxia in Spain. Trying to cope with the disease . Someone much younger than I will have the benefit of the research you are doing. Thank you for your invitation- but NO – I will not be joining you !
Kind regards Martha Harlam
Escaping Paralysis : Rob’s journey with Lokomat®
Summer of 2003, it was a lovely day in Racine, Wisconsin, on the shore of Lake Michigan. As the weather was perfect for a boat outing, Rob decided to take a dive into the cool water. Unfortunately, the waters were shallow in the area and Rob got seriously injured.
At the nearest hospital, he was diagnosed with a spinal cord injury, which left him almost completely quadriplegic from the chest down.
“[With Lokomat®] I had the chance to feel and see myself up and walking again. It was the most emotional and inspirational moment of my life… all the sudden I had hope again. It was the turning point of my recovery and the beginning of my life’s mission.”
– Robert Heitz
Ataxia UK – Brain tissue donation for Ataxia research
We have some information on brain donation for research on our Ataxia UK website: https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/brain-donation/
In the UK, this is managed by the Brain Banks Network. People with ataxia would go through this process with them, rather than involving Ataxia UK. I imagine this is very different in different countries.
“Hill Day” September 21, 2022
The NAF and FARA, for the fourth time, combine their efforts together to create Ataxia awareness on “Hill Day “ September 21 , 2022. You can also join their efforts on behalf of the Ataxia community. All together ( with members of Congress) we will help to get federal funding for research into the needs of the Ataxia community. Join us in the fight against Ataxia .
Euro Disney goes all out for handicap people!
The Euro Disney park first opened its doors in 1992. Ever since 1992 their rides and hotels have catered to handicapped people. Everyone of the Disney hotels have handicap room facilities. New pricing has been offered for their 2022 – thirty year anniversary. Package deals + tickets to the park, make a visit very attractive to families with disability needs. Euro Disney is a great advantage to people who want to put Paris In their travel itinerary.
John Hopkins Ataxia center
The John Hopkins Ataxia center is one of the premier Ataxia hospitals in the USA. Their genetic research and affiliation with the National Ataxia Foundation is known worldwide.
Located in Baltimore Maryland, the Ataxia center runs many clinical trials for all forms of Ataxia. Their work is supported by the federal government in the USA.
NAF – 2022 Annual Ataxia Conference – From Care to Cure!
Annual Ataxia Virtual Conference – Solution Project Scholarship
On March 17 – 19 the Solution Project has been invited to join the Annual Ataxia Virtual Conference. This attendance invitation is being offered to the Solution Project on a free-scholarship basis. The Solution Project will also be a participant of the exhibition along with other participants and sponsors of the event.
The research and treatment of Ataxia will be discussed by the foremost people connected with Ataxia and the prospect of Ataxia development. The cost per day is $ 50.00 . Contact the National Ataxia Foundation about your entrance to the conference.
NAF virtual conference & exhibition ( March 17 – 19 )
The virtual conference about Ataxia- produced by The National Ataxia Foundation has great speakers and exhibition participation on all things dealing with Ataxia. The entrance fee per day associated with the Virtual Conference is $50.00. But the exhibition is free to anyone who wants to join. Contact : email@example.com to learn about how you can be a part of the event.
New partners for the Rare Disease community
Ataxia is a rare disease! The rare disease community has more obstacles and hoops to jump through than others. But new partners in the rare disease community are pushing researchers, patients and their caregiver families to find ways to cope with the situation.
Ataxia has had the good fortune (since it’s hereditary progressive nature in my family ) to be one of the lucky 400 diseases out of 7000 rare diseases to have a chance for treatment or a cure due to research. We know more about the Ataxias then ever before!
But two rare disease campaigners have paved the way for more advancement. Take a look at Disorder Channel T.V. And Rare Mamas! Their initiatives are innovative and give us hope.
God Helps Those Who help Themselves!
This story is about something everyone with Ataxia should be actively involved with. Because no one knows you – like YOU! Learn about your needs and what you can do for yourself.
BE YOUR OWN DOCTOR! READ UP ON IT !
HELP YOURSELF AND YOUR CAREGIVER !
BE SMART AND KNOW AS MUCH AS A DOCTOR !
ONLY YOU KNOW ABOUT YOUR DISEASE NEEDS !
After years of living with my own body – I’m in a position now to know about the situation and my needs at the late stages of Ataxia. Ever since I have been going to the neurologist, it seems like I know more about my Ataxia than they do. My GP has helped me more than anything. Only my daily caregiver attends to my real needs! But you can help your own situation. Be in real communication with your caregiver ! Be as knowledgeable as your doctor! Talk to your pharmacist! You can help yourself !
Research into Ataxia has a bright future
In 2021 my website was just getting off the ground. Many people , since then, have taped into this awareness Ataxia website. Now in 2022 my focus has been on the research and stories behind the research.
Many laboratories , pharmaceutical companies and Ataxia centers in the USA have zeroed into finding treatments that will lead to a cure for the neurological disease-Ataxia ( all types ).
The laboratories of Christopher Gomez at the university of Chicago, Mirkin lab at Tufts university Massachusetts, the Schumann lab at MGH Boston, Ataxia Lab at Columbia university in NYC , John Hopkins Ataxia center a.m. . All are sharing information about Ataxia, SCA and their networks along with the USA charities of FARA, NAF and CACN1A Foundation.
Ataxia is being discussed on Capital Hill in Washington D.C. for government funding . Even research charities in the UK, Europe, India and all over the world have put research regulations in place. The future of Ataxia looks very bright.
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)