Niagara Falls Lights for HHT Awareness

On Saturday, June 30th Niagara Falls will be illuminated with Red and Blue lights to celebrate HHT Awareness Month! You can WATCH THE COLORS LIVE from 9:30-9:45pm and 10:30-10:45pm. This website, https://sites.google.com/site/niagarafalls4hhtawareness/, has lots of HHT resources.

Keith Scouten of Niagara Falls, NY organized this activity to raise awareness about HHT in his community. He has received media support with a printed news article in his local paper. In addition, Keith will be at the Niagara Falls on June 30th, along with the Mayor and many supporters, to provide literature to all who pass by.

Keith has suffered from HHT all of his life but only recently has he found knowledgeable physicians and a strong support base through the HHT Foundation Facebook group. Keith shared his story in the most recent Direct Connection newsletter. An excerpt from his story gives you a glimpse into why Keith has organized this HHT Awareness Event.

"It was around this time that my sister told me there were Facebook groups for people with HHT; it was then that the feeling of isolation of having a genetic disorder that the world seems to want to ignore began to dissolve.  In these groups, we step beyond the world that is uneducated and unaware of this severe yet treatable disease.  I realize now that there are over 2,000 members on the combined groups that are all saying to each other “we understand and we’re here for each other and we will get through this”.  Each one of us knows the frustration of looking to care for ourselves and our families only to get shrugs and blank looks.  These groups have brought us together as one, with the same mind, to talk to each other, to support each other, to be there for each other, working together for awareness and understanding.  It has been said that there is strength in numbers and the HHT Facebook Group members are that strength that sufferers and families of sufferers need.  It is a blessing from God that He brought me to these HHT pages and if you spend some time and read the posts you will see there are many members of these groups who feel the same way.

As I was driving home from my visit at an HHT Center of Excellence, I was thinking about how wonderful everyone was at the HHT Center.   After years of frustration dealing with medical facilities that simply don’t have any knowledge of HHT, and some even with the attitude that your making something up, it was such a relief and a blessing to deal with a medical facility that knew what I had, knew how it affects me, and knew the special treatments that coincide with this disease.

As I heal up and become stronger, while I still have the free time from work, I started thinking of ways I can help increase HHT awareness in my area.  Suddenly the dream came alive in my mind.  I could use Facebook to encourage others to take the information that the HHT Foundation has provided and share it with their doctors.  I realized that if all 730 members of this Facebook group could drop off information to 5 local hospitals or medical facilities, 3,650 local hospitals and medical facilities would now be aware of HHT.  Could you just imagine if the next time you take your child into a medical facility with nosebleeds you hear “we know what this is and we can take care of it?”  The people of the HHT Foundation have shown us that we can make a difference so I am going to make one!"

Support Keith and the HHT Foundation. 

Get your family and friends to WATCH THE COLORS LIVE

from 9:30-9:45pm and 10:30-10:45pm.

HHT Taking Global Awareness to New Heights

As you know, June is National HHT Awareness Month and June 23, 2012 was the 1st Global Awareness Day! Many individuals have been sharing their HHT Awareness stories on the HHT Foundation's Facebook page.

Here are a few news stories that have aired on local television or printed in the newspaper:

A'Lisa Hamilton - Local Family Shares Scary and Bloody Disorder

Krystal Pearce - Living with HHT

L. Wayne "Doc" Hanks - Local Family Raising Awareness About Blood Disorder

Keith Scouten - Lighting the Niagara Falls in Blue and Red on June 30th

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We are grateful to the Patient Association in Argentina for posting the Global Awareness Day Logo on their Facebook page and promoting awareness activities.

The HHT Canada Association has arranged for the CN Tower to be lit in blue and red on June 29th. You can read the Press Release for this event or visit their newly created website, www.hhtcanada.com, and Facebook Page.

As June comes to a close, we'd love to hear what you have done or plan to do in the month's to come. Contact Cathleen Kinnear at the HHT Foundation International office.

 

HHT Awareness is not a one time activity, it is a lifetime event.

Join us in this fight!

 

HHT Awareness Replenishes the Blood Supply

Leonard Wayne Hanks, affectionately called "Doc" by his friends and family, is passionate about raising HHT awareness and replenishing the blood supply that so many HHT patients need in his home state of Louisiana. The last two years, Doc has partnered with LifeShare Blood Centers to host blood drives that do just that and the local media is following his story.

Channel 7 News on KPLC reported a full story on June 14, 2012

Doc is traveling to Baton Rouge on June 22nd for a live interview on the Around Town TV Show that will air in South Louisiana. Doc is scheduled for more television interviews and blood drive promotions throughout the month of June.

Doc comes from a large family. His grandmother had 10 daughters and 1 son and over half of his relatives have HHT. Doc is dedicating this campaign to his cousin, Raymond LeBlanc, who passed away from HHT on October 4, 2010 at the age of 64.  Raymond started getting blood 10 years ago. In 2010, he was getting 3 transfusions a week. In 2009, Raymond received 192 transfusions at the cost of $386,934.

According to Doc, his "goal is to educate people, help with blood drives, and to recruit people to help the HHT Foundation with getting federal funding for research."  Doc Hanks is a Regional Networking Coordinator in the state of Louisiana and over the years he has handed out the My Family Has HHT Brochure at local schools and health units across the state of Louisiana. In addition, Doc has  educated school nurses in his district and had multiple meetings with his Congressional Representatives.

June is National HHT Awareness Month and the HHT Foundation, Doc's family, and all people with HHT need your help!

You can join the fight by donating blood in your city, organizing a blood drive in your community, or by donating to the HHT Awareness Challenge. If you would like to volunteer in the fight against HHT contact [email protected] or call the HHT Foundation at 800-448-6389.

EVERYONE CAN DO SOMETHING and EVERY LITTLE BIT COUNTS!

 

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:

  1. 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!
  2. 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.
  3. 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.