A disease may be rare, but hope should not be.
Here at Cure GM1, we all remember the day we heard the words GM1 Gangliosidosis for the first time. We understand how powerful those feelings of fear, grief and rage are. Cure GM1 exists because we want to offer the support, guidance and hope for you and your family.
There is no denying how challenging the first days and months after diagnosis are, but we promise that you will able to lead a life that has room for happiness and joy after GM1 “intrudes” on your life.
The good news is that breakthroughs in treatments are offering new hope to families. We are working every day to advance research for GM1, and we believe a cure is going to happen in our lifetime. For more information and to contact someone who has been in your shoes, please contact info@curegm1.org
Getting more information on clinical trials, treatment, and care for GM1 Gangliosidosis.
You have now found the Cure GM1 website on your Google search. We recommend you stop messing around with the internet since so much of the information out there is out of date and confusing. Because the research is so fast moving and because much of it is not published, many medical sites, even ones you could normally trust, will give you an inaccurate and often skewed perspective on what to expect.
Your doctors can assist you with selecting a clinical trial and contacting the trial’s principal investigators and sites. However, we recommend reaching out to us because we have the greatest context of the overall picture and we keep abreast of all the press releases and results.
You are probably looking for information on yours or your child’s future, which your local doctor cannot give.
Please reach out for an informational letter and we will do our best to assist you in navigating the current landscape.