Be a Cure HHT Everyday Hero
Giving is about more than money.
Giving is working together to make a difference.
Giving is being an Cure HHT Hero.
This year is all about empowering yourself and others to ACT now and lead the Cure HHT mission! And joining the cause is even more fun with the new Cure HHT Everyday Hero event site.
How it works:
Your options as an Everyday Hero are literally limitless! Get creative and start your own Cure HHT event.
Have a school bake sale - Host a cheese and wine night with friends - Run a 5k or Tough Mudder - Throw a Zumbathon - Organize a community bingo night - Make and sell jewelry at a craft fair - Collect bets from Superbowl games.
Join these Cure HHT Heroes:
Lay Down the Law with Cure HHT
January 13, 2016
Presented by: Mark Vieth, Senior Vice President, CRD Associates and Marianne Clancy, Executive Director, Cure HHT
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Mark Vieth is a Senior Vice President for CRD Associates, a government relations, public policy and strategic development firm in Washington, DC. Mark has served as the Legislative Advisor for Cure HHT for the last six years. He has helped clients secure federal funding, build new partnerships with federal agencies and mobilize grassroots to advocate for legislation pending in Congress.
Marianne Clancy became the first Executive Director of Cure HHT in 2001. Prior to that, Marianne served on the HHT Foundation board of directors, founded a health care consulting company specializing in trans-dermal drug delivery and oral health care, worked in national health care management with Oral-B Laboratories, a Gillette Company for 14 years, and held faculty positions at Forsyth Dental Center, Boston University and Tufts University School of Dental Medicine.
Join Cure HHT Executive Director Marianne Clancy and Legislative Advisor Mark Vieth for a behind-the-scenes look at the HHT DATA Act. Learn what passage of the act would mean for you, what progress has been made since the act was introduced this past April, the most recent push for senate sponsorship and what you can do to lay down the Cure HHT law.
- Congress 101 - who are your Members of Congress, when are they in session in DC and their home offices, how are their Congressional offices staffed?
- HHT Advocacy Initiatives
- HHT Diagnosis and Treatment Act (H.R.1849) - why is it needed, what does it do, what will happen when it's enacted, what is the status of the bill, and how can I help?
- HHT Legislative Fact Sheet and Website links provided in the webinar
Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.
(Please write "webinar" in comment section of donation form)
2015 HHT DATA Act Updates
The HHT Diagnoses and Treatment Act
Laying Down the HHT Law
The HHT Diagnosis and Treatment Act HR 1849 was introduced in the House of Representatives on April 16, 2015 as part of the 114th Congress.
The bill would be the first to create a federally led and financed initiative for early diagnosis and appropriate treatment of hereditary hemorrhagic telangiectasia.
The HHT DATA Act would require the Centers for Disease Control and Prevention to conduct surveillance initiatives, start an internal HHT resource center and conduct public awareness programs.
The act would also authorize the appropriation of $5 million per year for the next five years to be used to improve early detection, screening, diagnosis and treatment of HHT.
Our goal is to get as many legislators as possible to co-sponsor this bill! It's time to lay down the law for Cure HHT.
Click to get the HHT DATA Act passed by the end of the year!
U.S. House of Representatives
The HHT Diagnosis and Treatment Act of 2015 was introduced by U.S. Representative Ed Royce of California and U.S. Representative Jim Himes of Connecticut on April 16, 2015.
House of Representatives Sponsors:
Ed Royce (R – CA)
Jim Himes (D – CT)
House of Representatives Co-Sponsors:
Rosa DeLauro (D-CT)
Zoe Lofgren (D-CA)
Eleanor Norton (D-DC)
Find your Representative
We are actively working on finding a senate champion for the HHT DATA cause!
Do you think your representative is right for the job? Let us know at 410-357-9932 or [email protected]
Click to Find your Senator
A World of HHT Awareness
Get on the Interactive Map!
Cure HHT is taking it up a notch for HHT Awareness Month and setting some serious goals! We have created the "Make the Invisible Visible" campaign in conjunction with HHT Awareness Month to double the HHT diagnosis rate. Only 10% of people with HHT have been diagnosed, even though one in every 5,000 people has the genetic disease.
It's time to #SeeHHT and make the #InvisibleVisible.
So, how can you help Cure HHT drive up the diagnosis rate? You can create a World of HHT Awareness.
Each Monday, we will post a Cure HHT Challenge on Twitter and Facebook. You have a full week to complete each challenge and post or send some type of photographic proof with your location to us at [email protected] Cure HHT will then update a map each week to show the progress of HHT awareness around the world.
Let's create a World of HHT Awareness together!
Challenge One: Purchase a pair of the exclusive Cure HHT Jamberry Nail designs before June 10. Once applied, show your nails off to at least five people during HHT Awareness Month. And don’t forget to send us a picture so we can add you to our interactive awareness map! Pictures of buying your design or showing them off is accepted.
Get started: http://curehht.org/get-involved/fundraising/hht-fundraising/
Challenge Two: Make and submit a video that highlights HHT topics, stories or events. We’re open to personal videos filmed using a phone or computer as well as more complex video pieces from those multimedia experts out there. Check out this super simple way to get your HHT experience out there: http://curehht.org/get-involved/submit-your-video-story/
Challenge Three: We have more than 300 supporting votes for the HHT DATA Act, but we need to continue the fight. Call your house and senate representatives and encourage them to co-sponsor the bill. Here is everything you need to get started: http://bit.ly/1IZLtgo.
Challenge Four: Print out these HHT information cards and give them to people throughout the day. Try handing one out every time you give someone your business card or leave them on the restaurant table with your bill.
View A World of HHT Awareness in a full screen map
The Agapi & Hope Gala is February 22!
We're so grateful for our Board Director Despina Viniotis Curtis for organizing and putting on the first Agapi & Hope Gala in honor of her mother who lost her battle with HHT disease last year.
This red-carpet event will take place at the Embassy Suites RTP in Cary, NC on February 22 and features a red carpet entrance, great music and dancing, live and silent actions and wonderful food--all to benefit the HHT Foundation. If you're interested in attending this one-of-a-kind event, purchase your tickets here.
Need another reason to attend? Check out these great auction items:
- A Personal Connection with Jack "The Golden Bear" Nicklaus
The winner will not only receive a model putter hand signed by this legendary golf champion, but will also receive a letter on Mr. Nicklaus' personal stationary addressed and signed, thanking them for their support of our Agapi & Hope Gala! These items will be presented to you in a professionally made, high-end framed shadowbox with a photo of him from the Masters as a bonus!
- VIP Hollywood Access + Tickets to the ESPYs
The winner will receive two tickets to the live 2014 ESPY Awards Show - The Greatest Night in Sports with Hollywood and sports celebrities. Also included are spectator acess the ESPY Celebrity Golf Classic, $650 airfare credit so that you can create your own travel arrangements including dates, airline and flight class and 4 Day/3 Night deluxe accommodations at 4 Star hotel within walking distance to the famed Nokia Theater in the heart of Hollywood. Winners will also be added to the guest list to another major event at an iconic location the night before the ESPYs.
- Attendees will also have the the opportunity to bid on artwork from children with HHT in the silent auction.
If you aren't able to attend this event, but would like to contribute, we are looking for more auction items and additional artwork for the silent auction (the more Crayola, the better!). Please send any works to The Agapi & Hope Gala, 105 Redfern Drive, Cary NC 27518 address send by the first week of February.
The deadline to purchase tickets is February 7. Get yours today!