[Ct-nfb] Call to Action - Usher Syndrome Coalition

Thu Mar 17 15:34:56 UTC 2016

Dear Linda,

Thank you for reaching out to the National Federation of the Blind of Connecticut about your legislative issue. It is an honor that others in the community are recognizing us as the strong advocacy machine that can impact the decisions made by our legislators. I got my master’s degree at Louisiana Tech University; as you probably know, the Cajun people have an extremely high rate of Usher’s syndrome.

As you may be aware, we are knee-deep in a number of other initiatives at the moment, all of which are aligned with the purpose of our movement. While your initiative to better fund research on Usher’s syndrome is a useful and valuable one, our movement focuses on the social and psychological aspects of disability rather than medical ones. For example, we work to educate the public about how it is not valiant or courageous to live a normal life as a blind person. Every day, the National Federation of the Blind works to raise the expectations of blind people because low expectations create obstacles between blind people and our dreams. We know that, with the right training and opportunity, we can live the lives we want; blindness itself is not what holds us back.

I wish you luck in getting more funding for Usher’s syndrome research, and I am hopeful that you are able to educate the public about the normality and capacity of deaf-blind people in the process.

Thanks, again!

Justin Salisbury

Justin M. Salisbury, MA, NOMC, NCUEB
Legislative Coordinator
National Federation of the Blind of Connecticut
Email: President at Alumni.ECU.edu<mailto:President at Alumni.ECU.edu>
LinkedIn: https://www.linkedin.com/profile/view?id=325734822
Twitter: @SalisburyJustin

"None can be free as long as any are enslaved"

Dr. Kenneth Jernigan

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Linda O'Donnell via Ct-nfb
Sent: Wednesday, March 16, 2016 10:31 AM
To: Ct-nfb at nfbnet.org
Cc: Linda O'Donnell <lmo082308 at gmail.com>
Subject: [Ct-nfb] Call to Action - Usher Syndrome Coalition

I have Usher Syndrome and received the following call to action.
Could you please distribute this and hopefully everyone will help!
Thanks!
Linda
From: "Usher Syndrome Coalition" <k.vasi at usher-syndrome.org<mailto:k.vasi at usher-syndrome.org>>
Subject: Call to Action: Ask Your Representative to Sign on to Support the Inclusion of Usher Syndrome Report Language

[Usher Syndrome Logo Header]<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654784&Href=http%3A%2F%2Fwww.usher-syndrome.org%2F>

URGENT: Ask Your Representative to Sign on to Support Inclusion of Usher Syndrome Report Language

The Usher Syndrome Coalition recently spent a busy two days in Washington, DC<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654785&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fdreams-and-realities.html>.

Today, we ask you all to reach out to your representatives<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654786&Href=http%3A%2F%2Fwww.house.gov%2Frepresentatives%2Ffind%2F> to encourage them to sign on to a Dear Colleague letter supporting Usher syndrome report language.

Congresswoman Niki Tsongas is leading this letter to the House Committee on Appropriations, which is being circulated on Capitol Hill today, Monday, March 14th.

This letter urges representatives to join the Congresswoman in supporting research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing on to the letter by close of business Monday, March 22nd.

It's important that your representative hears from you within the next week. As evidenced by our past advocacy efforts, when you speak, they listen.

Click here to find your representative by zip code.<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654786&Href=http%3A%2F%2Fwww.house.gov%2Frepresentatives%2Ffind%2F>

Once you've located your representative, you'll be able to click through to a "Contact" page where you can send him or her your personalized message.

Here's a sample message to work from:

Dear Representative (Name):

My name is [NAME] and I [HAVE USHER SYNDROME/HAVE A FAMILY MEMBER OR FRIEND WITH USHER SYNDROME/AM A RESEARCHER WORKING ON USHER SYNDROME]. Usher syndrome is the most common genetic cause of combined deafness and blindness. It impacts nearly 50,000 Americans. Those with Usher syndrome and their families demonstrate courage every day in overcoming the challenges they face.

I urge you to support research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing the Dear Colleague letter to the House Committee on Appropriations in circulation today. Lead by Congresswoman Tsongas, this letter supports the inclusion of report language directing the NIH to prioritize Usher syndrome research at the National Eye Institute (NEI) and the National Institute on Deafness and Other Communication Disorders (NIDCD). The deadline to sign on is COB Tuesday, March 22, 2016.

We hope we can count on your support and we look forward to working together in order to eradicate this disease for current and future generations.

Sincerely,

[Name]

Email your House Representative now.<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654786&Href=http%3A%2F%2Fwww.house.gov%2Frepresentatives%2Ffind%2F>

Questions?

Contact us toll free at 1-855-998-7437 or email Krista Vasi at k.vasi at usher-syndrome.org<mailto:k.vasi at usher-syndrome.org>.

Videophone (VP): 1-631-533-9621

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Our Contact Information
Usher Syndrome Coalition
2 Clock Tower Place, Suite 418
Maynard, MA 01754
1-978-637-2625
http://usher-syndrome.org/<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654787&Href=http%3A%2F%2Fusher-syndrome.org%2F>

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