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Alex TLC Community Weekender

by Alex TLC in Birmingham, England, United Kingdom

£30

raised of £5,000 target
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supporters
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This project will only be funded if at least £5,000 is pledged by 22nd April 2020 at 12:00am

A weekend event to align those directly affected by a rare disease with a peer support network, medical professionals and researchers.

by Alex TLC in Birmingham, England, United Kingdom

We provide support, advice, knowledge, and care for those affected by genetic leukodystrophies. The majority of these rare conditions are largely untreatable and sadly terminal. 

Our Community Weekend is a biennial event to bring together our leukodystrophy family to build meaningful support networks.

Our 10th Community Weekend is our most ambitious and inclusive to date. Specifically designed to bring together sufferers and their families, alongside doctors, researchers and scientists from around the world to meet, learn and support one another over a weekend of talks and activities.

As the only event of its kind within the UK for those affected with a leukodystrophy, our vision is to build stronger peer support networks, awareness, and education through a vital calendar community event to complement our support services for families and sufferers whilst facilitating open dialogue with medical professionals.

Our weekend event sets a legacy and influences our community communications well into the future, creating peer support networks that our families so desperately need.

In 2019 we expanded our services, due to increasing demand, to support all leukodystrophies.

Alex TLC currently receives no government funding and the charity’s running costs are funded through the profits from our five Charity Shops. We rely heavily on donations, grants, and fundraising initiatives to maintain our support services for all those affected with these diseases.

  • 3-Days: Fri - Sun
  • 200+  attendees
  • Presentations from medical professionals
  • Group Q & A sessions 
  • Workshops & activities for families
  • Child-led fun activities
  • Peer networking & support
  • Geographically central UK venue
  • All-inclusive for affected families
  • A wealth of knowledge & research

 

“...a perfect balance of medical information, social activities and a wealth of knowledge from professionals around the world in one place.”

 

 

 


“ When my son was diagnosed with ALD at 4 months, it was a very scary, worrying and unsure time. They told us about a weekend away they organise to get families together who are in the same position as us. I was a little unsure at first as it's a very personal thing to deal with and we really didn't know what to expect. This charity weekend to me is my Leukodystrophy family, it's a time for us to get together to laugh, cry, think and learn from each other. I love these people so much. The fantastic effort that the Alex TLC team put in is phenomenal, we really couldn't imagine not having that time in our lives.”

“ There was a great atmosphere… As a parent new to this condition I felt understood, and had the chance to overcome the isolation, which had nearly beaten me over the last year. ”

“ An excellent event for both patients and professionals - this is the best event of its kind I have ever attended ”

“ No amount of reading or researching can actually compare to actually speaking to families managing day to day with this condition”

Why Families and professionals attend*Statistics from our 2018 Community Weekend survey


The main driver for attendance is peer support.

181 people attended our 2018 Weekender, 115 of these were individuals and families coping with a Leukodystrophy. Of the remaining attendees, 41 were medical professionals and 25 were staff, volunteers or trustees of Alex TLC.

Our survey from our 2018 Community Weekend showed that 71% of those attended the event to seek peer support. 4% attended in order to seek support after losing a loved one to a Leukodystrophy.

The remaining 25% attended due to professional involvement, this included Medical Professionals, Pharmaceutical Representatives, Partner Organisations, Communications Consultants, and Trustees.


Meeting & talking with medical professionals

An important element of the Community Weekend is the ability to question and talk to medical professionals. Attendees are invited to ask questions to those presenting and to question all presenters in a large group session at the end of the weekend. Medical professionals are available to actively engage with individuals and families throughout the weekend.

What other reasons are beneficial for those attending?

Those attending the Community Weekend due to their own condition or that of a loved one have a variety of reasons for attending our event. Over 80% hoped to learn more about leukodystrophies or have the opportunity to meet knowledgeable doctors and medical professionals.

How medical professionals benefit

The two main drivers for medical professionals attending our event is to meet other medical practitioners within a similar area of research and engage with families & individuals affected by the conditions they are practicing in. 

About Alex TLC

Alex, The Leukodystrophy Charity delivers high-quality support, advice, knowledge, and care for those affected by genetic leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal.

These very rare leukodystrophies have little to no support organisation working for them. Alex TLC focuses on the similarities caused by these conditions, embracing all affected within the community with Tender Loving Care.

We provide valuable support for all those living with leukodystrophy, raise awareness of these rare diseases, improve best practice in prevention, diagnosis & treatment and actively support medical research initia­tives. 

Our annual Community Weekend is a crucial event that allows our charity to align those directly affected by a leukodystrophy with a peer support network and to initiate a two-way conversation to assist medical professionals involved within this area of research.

How we support and how we service our rare disease community:

Let's make 'Alex TLC Community Weekender' happen

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