Dystonia Association, Support, & Information - Alberta , CA

29/04/2026

https://etapestry.sky.blackbaud.com/prod/viewEmailAsPage.do?erRef=137.0.58897559&databaseId=DystoniaMedicalResearchFounda_1&mailingId=49455538&jobRef=137.0.132977717&key=9246eb8610d571d99a95f476a9a60b3&personaRef=137.0.58897583&memberId=1408887010

29/04/2026

Reverse the Medicare Decision on Botulinum Toxin for Blepharospasm

23/04/2026

https://mailchi.mp/47dfac3b9d92/my-new-audiobook-coming-soon?e=c87193aada

I am very excited to share that an audio version is coming out for my second book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. This will be in addition to the current Paperback and Kindle versions. I made an audio version for my first book, Diagnosis Dystonia: Navigating th...

16/04/2026

Beyond Pain and Suffering: Adapting to Adversity and Life Challenges

16/04/2026

ATTENTION - YOUNG PATIENTS INTERESTED IN OR ALREADY INVOLVED IN A PATIENT ORG.

The deadline to apply is 22nd April 2026 at 10am.

Dystonia Europe is a member of EPF (European Patients' Forum) who asks us to share the following information regarding training for young patients between 18 - 30 yrs old
The deadline to apply is 22nd April 2026 at 10am.

What is STYPA?
STYPA is an exciting and unique opportunity offering a tailored, high-quality training programme for young patients or representatives of young patients aged 18–30. The programme provides participants with the space to develop advocacy skills, build leadership capacity, and explore key healthcare topics affecting patients across Europe.
The STYPA 2026 training aims to:
• Strengthen understanding of health literacy and its importance for patient empowerment and equitable healthcare
• Build young advocates’ ability to recognise misinformation and communicate trustworthy health information
• Equip participants with practical advocacy, communication, and policy engagement skills
• Support young patient advocates in promoting accessible, inclusive, and patient-centred health information
• Encourage participants to engage in national and European health policy discussions and initiatives
By achieving these objectives, the training will empower young patient leaders to actively contribute to shaping more transparent, inclusive, and patient-centred healthcare systems.
When and where?
1. Introduction webinar – June 2026
2. Face-to-face training – Friday 10th to Sunday 12th July 2026 in Brussels, Belgium
3. Follow-up online workshops & Closing Celebration – September to October 2026
Please note that EPF will cover travel and accommodation costs for all accepted participants.
Who can apply?
Capacity: 25–30 participants
Age range: 18–30 years old
Participants are invited from European countries, particularly EU Member States and Western Balkan countries with EU candidate or potential candidate status.
The programme is open to:
Patients living with a chronic or lifelong condition who are affiliated with a patient organisation
Patients living with a chronic or lifelong condition who are not affiliated with a patient organisation
Employees or volunteers of patient organisations
The programme can sponsor one family member or carer per participant if needed.
Participants should ideally:
Have a strong level of English (C1 minimum)
Be passionate about patient rights and advocacy
Have a basic understanding of health policy or patient involvement
Be interested in learning new advocacy and communication skills
Be willing to share their knowledge within their communities and are willing to be part of a large patients’ rights movement
Be available for the entire duration of the training
Have valid travel documents
*EPF will strive to achieve a balanced representation of nationality, age, health condition, gender and social-economic background.
How to apply?
You can apply by completing the STYPA 2026 application form and submitting it before 22nd April at 10am. If you have any additional questions or issues with your application, please contact the EPF team at:
stypa@eu-patient.eu

Can’t apply?
Please share this opportunity widely within your network to help us reach the next generation of young patient advocates!

16/04/2026

Last week in Brussels, Dystonia Europe's Vice President, Jukka Sillanpää, attended the General Assembly of the European Federation of Neurological Associations (EFNA). The meeting brought together EFNA members from different neurological condition areas and from across Europe for key updates, strategic discussions and reflections on progress over the past year. A workshop was also held, on the topic 'Insight to Influence: How Patient Data Shapes Policy and Practice.' Both events underscored EFNA’s continued commitment to collaboration, innovation and empowering the neurological patient community across Europe- something we at Dystonia Europe are proud to be part of!
Jukka is pictured here with EFNA's Executive Director, Dr Orla Galvin (left), and President, Astri Arnesen (right).

16/04/2026

Dystonia Day 2026 will take place on Saturday, 30 May, at Hotel Scandic S:t Jörgen in Malmö, Sweden, where we look forward to welcoming patients, their families, caregivers and the medical profession.

The program will include patient testimony and expert presentations and there will be lots of opportunities to network and connect with others.

Learn more and register to attend here: https://dystonia-europe.org/projects-1/events/dystonia-day-2026-in-malmo-sweden/

Svensk Dystoniförening Dystonie Vereniging Dansk Dystoniforening Suomen Dystonia-yhdistys ry Norsk Dystoniforening Dystonia UK Dystonia Ireland Belgische Dystonievereniging Dystonie Amadys Dystonie Treff online e.V. Dystonie-und-Du e.V. Associazione Italiana per la Ricerca sulla Distonia - ARD Asociatia Children's Joy
Društvo bolnikov z distonijo Slovenije Asociación Distonía España - ALDE

16/04/2026

Would you like to connect with others living with ? Then come to one of our Dystonia UK support group meet ups!

-Liverpool: 18th April, 1-3pm, The Brain Charity, Liverpool
-Lancashire & Fylde: 30th April, 2-4pm, The Clifton Arms at Warton, Preston
-Oxford: 9th May, 2-4pm, John Radcliffe Hospital Conference room, Oxford
-Edinburgh informal meet up with our North East group coordinators: 23rd May, 12pm, Toby Carvery Edinburgh West

These get-togethers are a fantastic way to meet friendly faces, share experiences, and spend time with people who truly understand.

To book your spot please email info@dystonia.org.uk, and to find out more, visit www.dystonia.org.uk/your-local-support-group.

10/04/2026

10/04/2026

Registration for Freedom to Move: Run, Walk, and Wheel for Dystonia is now open!

Be part of a growing movement to raise awareness, fund research, and support Canadians living with dystonia. Every step you take helps move us closer to better treatments and, ultimately, a cure.

Join us virtually anywhere in Canada or in person in Toronto, and make your impact count.

👟 Register today: www.freedomtomove.org
⏰ Early Bird deadline is May 14, prices increase by 50% after

10/04/2026

Good morning, Warriors. Be kind to yourselves today.

~ It's okay to not be okay ❤️ Danie