Pick Cure HHT for Your CFC
Combined Federal Campaign - CFC Number 10233
Think of the Combined Federal Campaign (CFC) as the federal government's version of United Way. All federal employees and military personnel get to select a charity of choice to receive donations via cash, check or automated paycheck deductions. The CFC charity drive runs from September 1 through December 15 of each year.
To designate Cure HHT as your desired CFC charity, use our CFC Number 10233 by clicking this link. When searching for Cure HHT, check under the "C" section rather than "H" for HHT Foundation International.
Please pass this information on to any family or friends who employed by the Federal government or military. We need everyone's support to discover a cure for this disease.
Cure HHT receives funds via many local United Way organizations. Does your employer offer a United Way campaign? It's an easy way to support the crucial mission to find, treat and cure HHT.
To designate Cure HHT through your United Way campaign, be sure to write in the full name and address as shown below:
PO Box 329
Monkton, MD 21111
Contact Cathleen Kinnear at [email protected] or 410-357-9932 with any questions.
NEW! Memorial / Tribute Donation Wall
A tribute or memorial gift is a meaningful way to honor those you love with HHT.
You can create a personalized tribute page by posting your loved one’s story and photos. Once your story is approved by Cure HHT it will be available online for others to see. Through your Tribute, others can share their memories and also make an online donation to help support the Cure HHT mission.
Your tribute page is a safe and special place online to share memories, recognize milestones, or express the emotions of struggle or loss. You can share the link to your tribute with family, friends, and co-workers. By memorializing your loved one, you will be helping others with HHT – and funding the search for a cure, so future generations will enjoy a world without HHT.
Visit the HHT Tribute Wall to read the stories that have been posted.
Don't miss out on making a difference - CALL CURE HHT at 410-357-9932 to provide your credit card over the phone!
#GIVINGTUESDAY is another opportunity to support Cure HHT and the crucial work of our organization. This year alone we have:
# Supported over 1,000 families, totaling approximately 350 hours, who needed assistance with their diagnosis
# Launched our webinar series that has touched over 4,000 people
# Funded $90,000 to support HHT research projects
These are only three areas Cure HHT has supported YOU and the HHT community every day. Visit our website to learn more about how your dollars make a difference.
We know you are receiving a number of requests during this giving season. We appreciate your gift at any level, and we are thrilled to share with you that through December 31, 2014 your donation will be tripled by a generous Foundation supporter. Make your donation today.
Imagine the difference your dollar could make.
Curry on Tukkin Taking Off January 1
One Australian team is certainly up to the challenge when it comes to taking on HHT!
Grant Maw and Philip Kendall from Queensland’s Fraser Coast town of Howard are going to test their metal on a 3000 kilometer journey down the entire Indian West Coast on a seven horsepower rickshaw, commonly called a Tuk-Tuk.
What makes this challenge remarkable is that they must complete the event in 14 days, without any backup or support, through some of the roughest terrain on the subcontinent.
So why are these two highly qualified IT professionals prepared to risk life and limb on what they parochially call their 3000Km Curry Run?
As Grant Maw explains, “This crazy adventure is really about doing something special for two very deserving charities that normally do not receive mainstream support or recognition.” Sure, it’s risky,” he adds, “but we both want to do something that will make a difference and really force us both out of our comfort zones."
Their quest starts Jan. 1, 2014 in the north-west Indian desert city of Jaisalmer and finishes a two weeks later in the southern city of Kochin. “I’m expecting 3000 km’s of shear torture on the Tuk-Tuk,” says Philip Kendall. “We’ve both been brushing up on our two-stroke motor maintenance skills, particularly on emergency repairs. Tuk-Tuks are loud, uncomfortable, and prone to breaking down a lot. Some would consider them a questionable long distance, off-road machine and possibly the least suitable vehicle on the planet for covering the entire subcontinent in two weeks.”
Proceeds from this unique adventure will help to raise awareness and fund research to find a cure for Hereditary Haemorrhagic Telangiectasia (HHT). This inherited genetic disorder of the blood vessels affects more than 1 million people worldwide. There is no known cure for this devastating condition and if left untreated can result in stroke, haemorrhage and in many cases, premature death.
The second organisation to benefit will be Cool Earth – an environmental charity that works in partnership with indigenous communities to help protect rainforests that without intervention will be destroyed within the next 18 months.
The team explains that 100 percent of all money raised will go to the charities. None will be used to fund their trip expenses.
To actively support the team’s fund raising efforts, or if you would like more information, please visit www.curryontukkin.com. You can also contact Grant Maw at [email protected].
The HHT Foundation will be following Grant and Philip closely throughout their journey. We're grateful that they have chosen the HHT Foundation as one of their beneficiaries and look forward to hearing all about their adventures!
Shop for the Holidays and Help the HHT Foundation
Have you started your holiday shopping yet? If you're an Amazon shopper, please use smile.amazon.com for your gifts! It's the same Amazon experience that you're used to, only 0.5 percent of your eligible purchases will be sent to the HHT Foundation--at no cost to you!
To get started, just click on the "Learn More" button and start shopping as normal. Please pass this link along to family and friends so they can also support HHT in their online shopping.
This link will work throughout the year, so please use it for all your online Amazon shopping!
2013 Strategic Initiatives Campaign
The goal of the HHT Foundation is to cure HHT in our lifetime! There are exciting developments in HHT research that give us hope that medical cures are within reach. Imagine drug therapies that could regress, or even prevent, AVM development.
Partner with the HHT Foundation to fund the strategic initiatives and bring an end to this disease. In our lifetime, we could see AVM treatment move from surgery to outpatient embolization to taking a pill - but only if we continue to advocate with scientists, doctors, the government, and pharmaceutical companies to make HHT a priority.
IMAGINE a world in which HHT is commonly recognized, easily treated and cured within our lifetime. This is possible if every person affected by HHT - patients, family members, and friends - contributed $100 (or more if possible) to our strategic initiatives campaign.
Give Hope. Give Help. Save a Life (or, Why Wait?)
"Why wait when we can make this happen now?" Is there anything more important to yourself and your loved ones? If you or a loved one is dealing with HHT, you know the answer.
The HHT Foundation has developed a five year strategic initiatives plan that will create the building blocks necessary to find a cure for HHT in our lifetime. To make this happen we need $2 million annually for the next five years. As the only organization in the world solely focused on HHT patients, you can be sure your investment in the HHT Foundation will go to the highest-return initiatives that can improve life of HHT patients today and in future generations:
- Provide "seed money" for research on promising therapies
- Improve access to care by adding more HHT Centers
- Build a registry of HHT patients to find which treatments work best
- Standardize HHT treatments to ensure patients get global best practices
Please give generously. Remember, your gift is tax-deductible to the full extent provided by law.
We can beat HHT much faster than ever imagined if we all pitch in!
ONLINE DONATIONS: Click Here
MAIL /FAX DONATIONS: Please fill out this form: 2012 Annual Appeal Donation Form.
Mail To: HHT Foundation International, Inc., PO Box 329, Monkton, MD 21111
Fax To: 410-357-0655
All Information submitted on this form is VOLUNTARY and STRICTLY CONFIDENTIAL.
HHT Awareness Campaign
Imagine going into a doctor's office or emergency room where HHT is recognized....
The HHT Foundation is calling on all of our members and supporters to step forward and take the HHT Awareness Challenge. 9 out of 10 people who have HHT are not yet diagnosed due in part to widespread lack of knowledge among medical professionals.
We NEED your help to increase awareness of HHT especially since early diagnosis and treatment offer hope for all of our families. We are embarking in partnerships to increase media awareness and the video, More Than A Nosebleed: HHT, is just one example of a tool that is very effective in capturing the media's attention.
The HHT Foundation is challenging you to raise awareness about HHT in your community all year long, but particularly during the month of June.
In 2010, Congress passed a resolution (H.R. 536 and S. 508) "recognizing June as National Hereditary Hemorrhagic Telangiectasia month established to increase awareness / educate the public about HHT". The HHT Foundation is expanding this proclamation to the world by partnering with the international patient associations and initiating HHT Global Awareness Day which will be celebrated for the first time on June 23, 2012.
The HHT Foundation's Awareness Campaign has 3 goals:
- Identify the 90% that are Undiagnosed - The more people hear about HHT - through word of mouth, watching a video, reading a post on Facebook, or researching nosebleeds on Google - the more people will be aware of the disease. This will ultimately lead to self-diagnosis, a visit to a medical professional, or a call to the HHT Foundation. These actions alone can potentially save a life!
- Educate Medical Professionals - According to a recent medical survey, most HHT patients experience an average of 11-14 years of misdiagnosis by Emergency Room physicians and Otolaryngologists (ENT) due to a general lack of knowledge about the disease. Awareness can lead physicians to seek information and training on how to diagnose, treat, and manage HHT which will ultimately increase the number of medical professionals who are knowledgeable about HHT and make it easier for patients to receive proper care.
- Motivate the HHT Community - We need HHT patients, physicians, and researchers to engage their families, local friends, Facebook friends, and co-workers in the fight to find a cure for HHT. The simplest thing you can do is send an email, which is already written for you, to your Congressional Representative. Although the Foundation has significantly advanced HHT in a variety of venues, we are only one voice - our message is so much stronger, louder, and impactingl when we all recite it together!
Check out the HHT Foundation's Facebook Page everyday in the month of June to learn a new fact about HHT.
Here are some great ways you can use social networking websites to increase HHT Awareness:
- USE YOUR STATUS UPDATES TO MOTIVATE AND ENCOURAGE - Encourage your friends with your status updates on Facebook, Twitter, or Linkedin by using HHT facts. You can link them to the HHT website (www.hht.org), the HHT video (http://video.hht.org) or the Awareness Challenge (www.active.com/donate/HHTChallenge)
- SEND A THANK YOU - Use Facebook to publicly thank anyone who helps you raise awareness, volunteer at an event, or makes a donation to HHT on your behalf. This lets the donor know how thankful you are for their support, but also encourages others to get involved.
- PUBLICIZE YOUR EVENTS - Use the "Events" application on Facebook to create an invitation for your event and send it out to all of your friends. Make sure you make it an open event so it appears in searches and guests can send it to their friends.
- RETWEET - On Twitter, become a follower of the HHT Foundation. Then you can retweet the messages you read with an additional message of your own.
We have developed the strategic initiatives and partnered with the experts. Better therapies and a cure for HHT are possible but we need YOU to make these goals a reality. The HHT Foundation is a non-profit member funded organization relying on the financial and volunteer support of those affected by HHT and their families. Please support the HHT Foundation by participating in HHT Awareness Month activities and spreading the word about the disease that affects your family.
HHT RECEIVES FUNDING FOR BRAIN AVM RESEARCH
OCTOBER 6, 2009 - The National Institutes of Health just announced a second phase of funding for the Rare Diseases Clinical Research Network (RDCRN). This research award will be funded over the next five years. Originally launched in 2003, the RDCRN addresses rare diseases through consortia and supports related to natural history, epidemiology, diagnosis, and treatment.
The HHT portion of the study will include 13 HHT Centers participating for 5 years. 875 patients will be recruited through HHT Centers and the HHT Foundation Conferences. The study's aims will:
-include demographics, symptomatology, cerebral angioarchitecture, other organ involvement
- Determine risk factors for hemorrhage HHT BAVM.
- HHT Brain AVM's will be compared against sporadic Brain AVM's
- Determine high risk interventional therapy
-Investigate the use of genetic mutations as potential marker for hemorrhage risk (Endoglin, Alk 1)
The full announcement of the award can be found:
Hometown Fundraising Ideas
Do you want to find a cure for HHT in your lifetime? If you answered YES, then we need your passion and enthusiasm to help us organize a grassroots fundraiser in your area.