Join me in Raising Awareness and Funds for The ED Society

Join Me in Raising Awareness and Funds for Ectodermal Dysplasia

My name is Rebecca Nelson, and I am thrilled to announce that I will be running in the Brighton Marathon on 6th April 2025. This event is particularly meaningful to me because I am running to raise both money and awareness for a very rare genetic condition called Ectodermal Dysplasia (ED), a condition that our son Alexander was diagnosed with back in 2016 when he was just 14 months old.

What is Ectodermal Dysplasia?

Ectodermal Dysplasia is a group of genetic disorders that affect the development and function of the skin, hair, nails, teeth, and sweat glands. The significant issues associated with ED can include:

**Inability to Sweat (Hypohidrosis or Anhidrosis):** Leading to a risk of overheating and heat stroke.

**Respiratory Issues:** Chronic respiratory infections due to abnormalities in the mucous membranes and respiratory tract.

**Severe Dental Abnormalities:** Missing or malformed teeth causing difficulties with eating and nutrition.

**Skin Issues:** Prone to infections due to dry and cracked skin.

**Eye Problems:** Chronic dry eyes and risk of infections leading to potential vision loss.

**Hearing Impairment:** Conductive or sensorineural hearing loss affecting communication and social development.

These complications are not only life-limiting but also significantly impact the quality of life for those affected and their families.

Why I'm Running

As a parent, it means the world to me to support the organization that has been a lifeline for us—offering free, comprehensive support to families and sufferers of this genetic condition across the UK. The dedication and support from this organization have been invaluable to me, my partner Graham, and our son Alexander.

I haven’t done any form of running for over seven years, and back then, I was able to achieve 5k in around 26 minutes. Now, I have started training again by attending the Park Run events held nationally on Saturday mornings. So far, my best time has been 36:29. Additionally, I am participating in a spin class once a week, with hopes to increase this to twice a week as my training progresses.

Despite the long hiatus from running, my aim is to complete the marathon in around 5hours and 30 minutes. This goal is ambitious but achievable with your support and encouragement.

Follow My Journey

I will be sharing regular updates on my training progress through social media. Your support, whether through donations or words of encouragement, will make a significant difference and motivate me to cross the finish line.

How You Can Help

1. **Donate:** Every contribution, big or small, will help fund vital research and support services for families affected by Ectodermal Dysplasia.

2. **Share:** Spread the word about ED and my fundraising efforts by sharing this message with your friends, family, and social networks.

3. **Encourage:** Follow my journey on social media and cheer me on as I train and run this half marathon.

Thank you for taking the time to read my story and for supporting a cause that is so close to my heart. Together, we can make a difference in the lives of those affected by Ectodermal Dysplasia.

With heartfelt gratitude,

Rebecca Nelson