I am a parent of a child with ush 1b. Usher coalition unifies our small population and gives hope to patients and parents alike.
I have a 37 yr old daughter with Ushers III. USH Coalition focuses exclusively on all types of Ushers doing education, coordination of research and clinical trials by scientists , domestically and internationally working on funding by the NIH/NEI for research . While an orphan disease, it is the largest cause of deaf Blindness, in the U. S and many foreign countries it is extremely efficient given its limited resources. There is no waste of human or financial resources. I am a volunteer, donor, parent of an adult going deaf and blind.
I was diagnosed with Usher syndrome when I was 8 years old. Because few people have Usher syndrome it was difficult for me to find information about the latest research. It was also hard for me to connect with others who have Usher Syndrome. The Usher Syndrome Coalition has changed that for me. Of all the wonderful resources the Usher Syndrome Coalition provides the conferences have made the biggest impact on my life. At the conferences I am able to learn about the latest research while connecting with others who have Usher syndrome. I am so fortunate that the Usher Syndrome Coalition has given theses opportunities, I am much more comfortable with diagnosis. There's hope! And I'm not alone!
I am a parent of a child with Usher syndrome. The Usher Syndrome Coalition has provided me with a constant source of information and support. Without it, I do not believe my daughter would be such an amazing success story.
The Usher Syndrome Coalition supports all of us who live with Usher Syndrome, working hardly for a cure and awareness, but mostly connecting all of us. Now I know that I am not alone on this and the Coalition makes this happen, it helps us to be a great community that works from wherever we are in the world, for the same cause
The Usher Syndrome Coalition has accomplished a great deal for people with this rare disease. It has brought together the researchers and the patients and their families, working together toward a common goal. We are closer to a cure because the researchers are now communicating at international research conferences, and the patients are now signing up for an international registry that is facilitating research and clinical trials. It is a wonderful example of what determined families and a cohesive community can establish.
Usher Syndrome (USH) Coalition (USC) is the first NPO I contacted last Spring, expressing my newfound endeavor in life is advocating for the deaf/blind community and to spread awareness of USH around the world. Key components of USC that impresses me is the USH registry database, accelerating research and the ability in connecting with other families living with USH. Last but not least is USC promoted "We need a global USH awareness day"! It was entered into congressional record July 29, 2015. USH awareness day is now annually, the 3rd Saturday in September.
This organization brings the entire community together including family members, care givers, researchers, clinicians, decision makers, as well as those with Usher Syndrome. By bringing everyone to the table, the Coalition is able to provide support and move us all closer to therapies that will make a difference.
It's hard to overstate the impact that this organization has on families that are often isolated and devoid of hope. They are more than a non-profit. They are the center of the Usher syndrome community.
The Usher Syndrome Coalition was the first place I turned when my son was diagnosed with Usher Syndrome. It welcomed my family with open arms and the founder, Mark Dunning, is one of a kind. We value the relationships that we have formed with fellow Usher Syndrome Coalition members and share a common bond that we can't share with just anyone. The people who work for the coalition, as well as those who volunteer their time are some of the most generous people I have ever met. One good thing about my son's diagnosis is meeting people who work every day to change the face and the future of Usher Syndrome for us all!
This is a non-profit that knows how to make change. 10 years ago before the coalition existed, I was told there was no cure for my disorder. Because of their efforts to accelerate research, doctors are now telling me there will be a cure in my lifetime. Their strength lies in their vision and sticking to that vision through a road map and collaboration with families, researchers and individuals affected by Usher syndrome.
This is a true grass roots organization that is truly making a difference! Board members are all volunteers, working together to make a difference for those affected with Usher syndrome. I have been working in clinical genetics for 15 years, and I have never known of another organization to pull together the research community to work so collaboratively.