Great Scottish Run Half Marathon - Glasgow 2nd Oct

Aim

I am raising money for a charitable cause that is very important to me so please donate and help me reach my target

As some of you know my younger Sister Sophie was diagnosed with Meningitis 11 years ago and to this day still faces a constant day to day battle.  

As a result of contracting Meningitis she was further diagnosed with EDS, which in turn also caused PoTS and Mast Cell Activation Syndrome (MCAS).

The Ehlers-Danlos syndromes (EDS) are a group of genetic conditions affecting the body’s connective tissue, resulting from collagen defects or defects in the proteins that interact with collagen.

Collagen is the body's most abundant protein and is responsible for being the 'glue' supporting and keeping everything together. It is found in the skin, bones, muscles, tendons, ligaments, eyes, blood vessels, gums, organs and other tissues.

EDS causes the connective tissues to be very fragile and stretchy which causes damage to the body. 

There are currently 13 different sub-types of EDS recognised and defined in the 2017 international classification and the most commonly-diagnosed sub-type is Hypermobility Ehlers-Danlos syndrome (hEDS). There is a severity spectrum of EDS ranging from relatively mild to life-threatening.

In recent decades, thousands of people have been through the journey of discovering their connection with Ehlers-Danlos syndromes. On average, it takes over 19 years for individuals to gain proper recognition of their condition, due to the huge range of symptoms and a lack of clinical awareness. This means an average 19 years of not living with an accurate diagnosis.

As a charity we are strongly focussed on individuals, with the goal of making a positive impression on those impacted by EDS. We provide support by actively advocating and educating the general public and medical community through national campaigns; financially supporting individual sufferers and their families through offering grants; and contributing to vital clinical research activities.

We fully rely on voluntary donations, so we can only achieve our mission with your support.

We understand that when you make a charitable donation, you want to know exactly where your money is going to. We appreciate every single donation we receive and work hard to ensure that every pound is contributed towards our mission to help save and improve the lives of those impacted by the Ehlers-Danlos syndromes. 

Mind Body EDS® life-changing work would not be possible without generous people like you. Your donation will enable us to:

• Advocate our charity’s mission and educate about Ehlers-Danlos syndromes in medical schools across the UK

• Financially support EDS patients by awarding them grants to enable them to access limited specialists that will lead to an early diagnosis, treatment, medical aids/equipment, and management of their condition to prevent disabling or life-threatening damages

• Contribute towards research studies that will hopefully improve the quality of life of patients and find a cure 

Whatever you choose to do, donating, fundraising or raising awareness, we are eternally grateful and thank you.

This project successfully funded on 20th July 2022