When Jordyn was diagnosed 2 years ago, I had never heard of Leukodystrophy or Alexander disease. I'm sure parents who were dealing with this disease and who had already heard those words would be upset to know that another person didn't know what those words meant. I see now where they are coming from. There are so many rare diseases even under the Leukodystrophy umbrella. I meet people all the time who can't even pronounce the word. In my mind, that's just unacceptable. I have made it my life's mission to make sure everyone knows what Leukodystrophy and Alexander disease are. I won't rest as long as I'm able to speak. I must be an advocate for my daughter. I MUST do all I can to educate those I meet. I must do all these things because who else is going to? As a rare community, we MUST make our voices heard. I do all that I can to make sure I'm loud and clear. It's up to us to come together to save our children. Will it be hard? Absolutely! But there are strength in numbers. Make your voice heard!
3 days ago
Adult Refsum Disease is an ultra-rare Leukodystrophy. Global DARE Foundation was recently founded to support individuals with Adult Refsum Disease. Our mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. You can find out more about Adult Refsum Disease at our website: https://www.defeatadultrefsumeverywhere.org/ We are hosting our first conference in London on May 15, 2020. We can use help finding more patients. Please share with anyone that may benefit. We will also be at the United Leukodystrophy Foundation conference in June.