Urgent Plea for Funding

October 4, 2017

by Mark Dunning

My apologies for the bluntness of this post but the Usher Syndrome Coalition urgently needs your financial assistance. In spite of the wonderful fundraising efforts by many of you during the Own the Equinox campaign, the Usher Syndrome Coalition only has enough funds to keep the doors open for another 60 daysThe Coalition is vital to this Usher syndrome community. In fact, without the Coalition there would not be an Usher syndrome community at all.

I am urgently asking for your help. Please donate to the Coalition today. 

I am not asking anything of you that my family and I haven't done ourselves. We have provided almost a third of the operational funding of the Usher Syndrome Coalition since its inception and I personally have volunteered thousands of hours of my time to the cause.

I happily do these things because the Usher Syndrome Coalition has been crucial to improving the lives of my daughter and my many friends with Usher syndrome.

The Usher Syndrome Coalition connects families, researchers and experts, and educates the community on Usher syndrome and Usher syndrome research every day. Without the Coalition, this will not happen.

If you are reading this: 

  • it is likely that you have met others with Usher syndrome with the help of the Coalition and it is quite likely that these are some of the most treasured relationships in your life;
  • it is likely that you have been introduced to an Usher syndrome expert by the Coalition and it is quite likely that expert gave you hope when you desperately needed it;
  • it is likely that you learned valuable information about the disease through the Coalition and it is quite likely that information was your first glimmer of hope during some of your darkest times.

We do these things by:

  • providing the only website dedicated to building and educating the entire Usher syndrome community, worldwide. In fact, in the past 6 months, nearly 25,000 visitors from over 100 countries have learned about Usher syndrome from our website.
  • organizing the only Usher syndrome-focused conferences and scientific symposiums. 
  • building a pool of candidates to complete clinical trials for Usher syndrome through our USH Trust registry, the largest international Usher syndrome registry in the world, created by the Usher community for the Usher community.
  • bridging the gap between the Usher community and the research community.
  • personally connecting with the community by video, phone, email, Twitter, and Facebook. Whether you have Usher or a family member with Usher or you are a researcher, we are there when you need us. And often those that contact us desperately need us.

All of these services are provided by one full-time and two part-time, wonderfully committed and knowledgeable staff members dedicated to supporting the Usher syndrome community.

All these things cost money. Unfortunately, we have seen a dramatic drop in financial support over the last year. Although our "Own the Equinox" and Usher Syndrome Awareness Day campaign has taken off worldwide, direct donations to the Coalition have dramatically fallen off. We believe this is an oversight. The Usher community has always been generous and supportive of the Coalition. And so, we are coming to you now with a straightforward and direct appeal. 

Without your financial support, we must begin laying off staff and closing down services. Beginning immediately, we will be suspending: 

  • all community outreach programs
  • coordination of future annual USH Connections Conferences
  • direct access to support via videophone
  • moderation of the USH Blue Book Online forum
  • development of PTSD and Mental health info and resources
  • the creation of videos in American Sign Language (ASL)
  • collaboration with NCDB, state deafblind projects, Helen Keller National Center, and NFADB
  • additional language translations of the USH Trust.

The operating expenses of the Coalition are relatively low. It costs $500 per day to run the organization and provide all the resources mentioned above. This year, we had 23 wonderful fundraisers and 200 generous donors raise nearly $33,000 during our Own the Equinox campaign. But we are a community of thousands and we need more people to help. To put this in perspective, about 3,000 people are on our mailing list. If everyone on our mailing list donated $10 a month, we'd be set for a year. So:

If you believe the Coalition has improved your life in any way, I hope you will join me in ensuring its continued existence.

There are many ways to give to the Usher Syndrome Coalition: 

  • You can donate on our website (here, you can also opt-in to make your donation a monthly gift), 
  • You can donate and receive tax benefits through IRA charitable rollovers, 
  • You can donate on our Facebook page, 
  • You can donate over the phone by calling us toll-free at 1 (855) 998-7437, 
  • or donate simply by mailing a check to our address below. 

Follow this link to keep the Coalition and our incredible Usher syndrome community alive: https://www.usher-syndrome.org/take-action/donate.html

Please feel free to contact me with any questions you may have. Thank you for your help.

Mark Dunning

E-mail:  m.dunning@lek.com

Cell: +1-617-650-8173

Mailing Address:

Usher Syndrome Coalition

2 Mill and Main Place, Suite 418

Maynard, MA 01754

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