At Home Superheroes, powered by MARVEL

15 June to 15 July 2020

For this super-flexible 20km challenge, you can fly solo or unite as a team (either with your household or remotely through the app) to walk, run, push or wheel around your living room, garden or neighbourhood. The choice is yours!

You can either fly solo or team up with family and friends to do as much or as little as you wish, with as much or as little support as you need. 20k is just a proposed marker!

As someone with mobility difficulties this is a real challenge for me and endurance is not the problem... pacing will be! I have Ehlers-Danlos Syndrome and Hypermobility which both cause me a lot of problems as I have a lot of joint instability and many of my joints are prone to hyperextending.

Other health conditions such as my arthritis and fibromyalgia cause excessive pain, stiffness and fatigue.

This means I need to be careful when being active and the reason why I shall be pursuing this challenge across a few days and not in one go.

My Choices:

Venue: Belle Vue Park, and surrounding area, Sunderland Tyne & Wear

How: Using my rollator / walker to walk a minimum of 10 K

Why?: To raise awareness of Fibromyalgia, Arthritis, Chronic Pain, Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders. Handing out literature and talking to people about these health conditions and other chronic or rare diseases. Also to raise awareness of FibroFlutters Patient Advocacy Organisation & Online Community Support Network to let people know that we exist for our local communities.

My Sidekick Superhero: Michael Scrafton my Care Support

Fundraiser Reason:

In 2015 I set up our wordpress site for our local support group members as a place where they could find illness related resources. Since then we have expanded year on year and now we are quite a repository of information and are swelling out beyond the seams of our outdated site. It a place where our advocacy work is shared from and where we share the work of others, support many other people and organisations from the world of chronic and rare disease, clinical, medical and even pharmaceutical. We are unique in that we support all stakeholders #notjustpatients.

FibroFlutters Patient Advocacy Organisation

Our site provides support for people all over the World as well as locally and nationally. We keep growing larger and larger as people join our Online Community Support Network too because of the all-round advocacy efforts that myself and other FibroFlutter members make.

The link below will give you a great view into the work that myself, and FibroFlutters, do and are involved in, if you think it is valuable please support us.

Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

We need to add the digital experience so that users can easily read what we share, via their mobile phones and tablets, because Desktops aren't really the gadgets used by people anymore and our statistics prove that.

It is important and relevant now as we are going through the transition into having an official status as a CIO and it would be great to have the website upgraded and associate App ready in time for that later in the year.

We are unfunded and all developments up to date have be financed out of my own pocket, but it has become the time to reach out and ask for help from the communities that I have been helping and assisting since we began life back in 2014.

I don't make the habit of asking for financial help, and I find it difficult, so I hope that you can feel a little flutter for us and please give a little to help our cause.

Many thanks

Carole CEO FibroFlutters Online Community Network & Co-Founder of Patient Advocacy Organisation & FibroFlutters Sunderland