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Solutions

Calling all Golfers

On 24 October a golf scramble is being held to benefit NAF research into Ataxia. Any golfer can join the efforts to help Ataxia research. Get in touch with Jannette to see how you can be a part of this event. Women too!
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A Note from NAF’s Executive Director

Hi Everyone! I am pumped up this morning! We have just wrapped up our two day live meeting with the principal investigators and clinical coordinators of the CRC-SCA natural history study.
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NAF announce the first international site for the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) natural history study!

NAF is proud to partner with Ataxia Canada and the Centre hospitalier de l’Université de Montréal in Montreal, Québec to provide the Ataxia community with a new clinical site that empowers individuals to participate in important research.

Dr. Antoine Duquette and his research team are now enrolling patients.

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New Spino Cerebellar Ataxia 1,2,3 diagnosed can receive free genetic counseling and testing.

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Ataxia researchers recognized by NAF

Dr. Harry Orr and Dr. Huda Zoghbi awarded the 2022 Kavli Prize in Neuroscience

NAF would like to congratulate Drs. Harry Orr and Huda Zoghbi for honors they received for their Ataxia research! The Norwegian Academy of Science and Letters named them as 2022 Kavli Prize Laureates in the field of neuroscience. Both researchers work closely with NAF and have served on NAF’s Medical Research Advisory Board.

The Kavli Prize recognizes scientists for breakthrough discoveries in astrophysics, nanoscience and neuroscience. The purpose of the prize is to recognize outstanding scientific research, honor highly creative scientists, promote public understanding of scientists and their work, and foster international cooperation among scientists.

Drs. Orr and Zoghbi received the award for discovering ATXN1, the gene responsible for Spinocerebellar Ataxia type 1 (SCA1).

SCA source is working with the NAF to give their Ataxia articles

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Update on Biohaven’s Troriluzole Clinical Trial

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A Note from NAF’s Executive Director

Hi All,

There is so much good stuff happening at NAF and in the Ataxia space these days. While I hope you’ll read all about it in our eNews below, I wanted to focus on one specific story this month, the purchase of Biohaven Pharmaceuticals by Pfizer. The details are in the story and link below, but I think we’re all going to have to get used to this type of news as more treatments for various forms of Ataxia are developed in the years to come. The pharmaceutical industry is a particularly acquisitive one, meaning pharma companies are bought and sold frequently. Often it is a larger company, like Pfizer, purchasing a smaller company, like Biohaven. In this case, Pfizer is most interested in Biohaven’s migraine treatment NURTEC, and then a new publicly traded company will be created that will retain Biohaven’s neurological pipeline. This is where the investigational drug troriluzole will be housed. In other cases, small, venture-backed pharmaceutical companies who have developed a promising therapy plan to be purchased by a larger company who can manufacture and distribute the treatment if approved.

While these acquisitions can be stressful for those participating in a clinical trial or waiting for treatments, they are very much “par for the course” in the pharmaceutical space. NAF will continue to follow the news closely and share items of interest with you all.

Andrew

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Find a Cure is rebranded Beacon for Rare Disease

There is a new rebranded name for Find a Cure! is: Beacon for Rare Disease.

The message is basically the same! Rare Diseases will get the spotlight it needs to Inform people about rare diseases and the affects it has on the global population. Ataxia is just one of the more than 7000 rare diseases registered. You can help support the Beacon for Rare Diseases by getting involved with their work and mission. There Twitter is now @Beacon for Rare Disease.

Schmahmann Lab

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The cruise industry has been hit hard !

Covid-19 coronavirus since 2020/21 was found on cruise ships. People , in spite of the precautions taken to keep the passengers safe , were still getting infected. A billion dollar industry was affected over 2 years. The cruise industry shutdown! Even now, people are being told not to go on a cruise due to the risks involved.

But now in 2022 the cruise companies are going to sea again. Bookings are up! People are learning to live with the risks the virus presents. Travel insurances are finding creative solutions to giving coverage for cancellations. But handicap people passengers have to get a double coverage policy. Coronavirus and your disability must be included in the coverage.

First it was just coronavirus. Then came the Delta and Omicron variants. Something else might pop up! The Solution Project is giving you information to plan your holidays. We have a link to keeping you safe and protected during this changing and challenging time for cruising and your healthcare protection.

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Consortium for the Ataxias

A consortium of the world’s leading research organizations, ataxia charities and pharmaceutical companies have all come together to share their knowledge of treatment for the hereditary ataxia diseases. Spino cerebellar ataxias are a part of the consortiums research into new treatments.

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The UN adopts Rare Disease Resolution

All 193 member states of the UN have adopted a resolution giving the global policy of the to Rare Disease community a voice. Combining the advocacy of 100 people who created a patient grassroots representation and major Rare Disease organizations from around the globe – a resolution was achieved. Rare Disease people can look forward to this resolution bringing care to patients, equity and policy changes on human health rights around the world. 300 million people living with Rare Diseases around the world are getting the policy attention they need and deserve. Rare is different but not alone!

Biopharma has a capsule SCA breakthrough treatment!

Hello everyone ! I have thanked biohaven pharmaceutical company.

Dear Melissa

That biohaven has developed a capsule treatment for SCA is beyond the word – FANTASTIC !

When my family was working together with the Ataxia center in L.A. back in the late 80’s – nothing existed. That you have pinpointed a treatment especially for the Spino Cerebellar Ataxias is nothing short of a miracle!

Thank you for your work and your help!

Kind regards.
Martha Harlam

Response

Hi Martha,

Thank you for your Email! Biohaven currently has a potential capsule treatment in a Phase 3 clinical trial. We are eagerly awaiting results from this trial and hope to expedite approval of the drug if our results demonstrate significant efficacy. We do have some long-term data from a phase 2/3 trial that is encouraging, but we need to await results from our current trial before proceeding with an application to the FDA.

Please feel free to reach out anytime for updates on the progress of this trial!

We so appreciate the dedicated ataxia patients in the trial and from the larger ataxia community!

Kind Regards,
Melissa

Dr Christopher Gomez lab.

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Reasons for Hope!

Many researchers, genetic Scientists and Grant Foundations are looking for ways to treat Ataxia and find a cure. Even the American Congress and healthcare governmental agencies are raising awareness and getting involved in Ataxia . So much laboratory research is being done on the search into the causes, treatments and genetics behind all types of Ataxia. We have a reason for HOPE!

The Mirkin Lab

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Hope through Research

The Ataxia community is getting a major boost for the level of research being done by Dr. Gomez Lab at the genetic department of the university of Chicago USA. Together with the CACN1A Foundation incentives for research into the CACN1A Gene.

The SCA6 network wants to share any information about the Spino Cerebella Ataxia 6 Contact Terry Boyle over our website.

Contact the CACN1A Foundation  info@CACN1A.org directly or the Ataxia awareness website:  https://miracle-answer.org for details about grant funding for scientific research.

New scientific officer for National Ataxia Foundation

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Ataxia – a tale of survival and hope

A Member of the Solution Project

“The doctors stood around my bed as they gave their diagnosis of the neurological tests. They were all unanimous in their decision. They all said I would need to give up my singing contracts and start to retrain for a new profession. But what that should be, they didn’t say. This was a scary pivotal moment in my life. “

A Member of the Solution Project