All Blog Posts (23)

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

Vanessa Riddle is suffering from cancer and she needs £500,000 for her life-saving treatment. The 11-year-old from Ayshire in Scotland is set to have her treatment in the United States when she reaches the goal. So far, she has received support from celebrities like comedian Kevin Bridges, LA Galaxy footballer David Beckham, television presenter Jonathan Ross, and singer Jessie J. She has also received donations from several football (soccer) clubs in Scotland like the Rangers and Celtic.…

26-year old Charles Fynn and his 22-year old brother Harry have recently pledged to commit themselves to raise funds for the Myelin Project and spread awareness regarding its aim. As we know, the Myelin Project is an international scientific organization that researches treatment on demyelinating diseases. The project is very close to the heart of the two brothers, as they have been both found to carry the rogue gene for adrenoleukodystrophy, or ALD.

ALD is a condition that destroys…

ALDSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

ALDSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

ALD Survivors, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Adrenoleukodystrophy (ALD) community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS ISSUE…

Adrenoleukodystrophy

At the age of 2 Dylan was diagnosed with Adrenoleukodystrophy , as was Jacob my 4 month old baby. This is a life threatening disease affects boys . The females are carriers and so I was the one who passed this awful disease to all three of my children. Aah...I know everyone is thinking including myself why in the world would you have another child knowing this.

Well after I had Jacob I wanted to have my "tubes" tied ,…

As a carrier of ALD has anyone any idea if i can get pregnant and prevent the gene from forming?

Our journey began with the stomach flu. On Aug 14 / 08 Zack turned 9 years old . After a few days he was becomming increasingly lethargic and unresponsive so we took him to the local ER. By the time we got there he was dehydrated and almost in a coma. After a day in the hospital and a lot of blood work which was sent to the children's hospital we went home. Two weeks passed and the children's hospital phoned to say Zack had Addison's Disease. His "stomach flu" was actually adrenal failure.…

looking for any imformation on carriers of ald please help

We have some important information we are happy to announce!

As you all know we run support networks for people affected who have a…