Anthony’s Swim for HHT!

RECAP: 12th HHT International Scientific Conference

For the first time at an HHT Conference, voices were heard from six continents, motivating interest for those new to the field, and encouraging young researchers and clinicians to continue to build a career surrounding HHT. The attendance of young scientists was at an all-time high and the conference was buzzing with the excitement of knowledge and opportunity – a buzz that could literally be heard during breaks and mealtimes when researchers and clinicians stood together plotting the destruction of HHT.

 

 

195 HHT scientists, many new to the community, traveled from far and wide to Dubrovnik, Croatia – the “Pearl of the Adriatic” – for the 12th HHT International Scientific Conference. A strategic location choice; if the exciting new breakthroughs in HHT research wasn’t enough to lure scientists to Dubrovnik, then the vast beauty of mountains and sea most certainly would be. While enticing, this great beauty was not distracting, as scientific discussion of mechanisms, diagnosis, and treatment of the disease raged on, fueled by espresso and 6am dips in the Adriatic.

 

It was truly amazing to see the array of information presented at this meeting in the form of 8 invited speakers, 58 oral presentations, and 117 poster presentations, that all function to develop a greater global understanding of HHT. As always, this event continued to foster the opportunity for scientific collaboration, welcome young scholars to the community, and rekindle old friendships. Enjoy these photos from the conference.

Oral Presentation Abstracts, Poster Presentation Abstracts and an Executive Summary of the talks and workshops will be published in the October issue of Angiogenesis. Cure HHT will also host a webinar this fall to review the highlights of the conference, with hopes that the knowledge gained from this meeting will spread and reach all corners of the HHT community. In the meantime, check out the Basic Science Summary Presentation presented by Dr. Carmelo Bernabeu and the Clinical Science Summary Presentation presented by Dr. Urban Geisthoff.

 

 

Cure HHT was honored to provide prizes for the best young scholar presentations. Congratulations to our winners!

HHT Young Scholar Travel Awardees

Clinical Oral Presentations

  1. Ali Tayebi-Meybodi, University of California San Francisco, USA
  2. Daniel DePietro, University of Pennsylvania, USA

Basic Science Oral Presentations

  1. Elisa Rossi, Université Paris Descartes, France
  2. Whitney Wooderchak-Donahue, University of Utah / ARUP Laboratory, USA

Clinical Poster Presentations

Anna Hosman, Netherlands

  1. Anthony Cannavicci, University of Toronto / St. Michael's Hospital, Canada
  2. Anna Hosman, St. Antonius Hospital, Netherlands

Basic Science Poster Presentations

  1. Sara Plumitallo, University of Pavia, Italy
  2. Melissa Hector-Greene, Duke University, USA

 

Thank You!

We'd like to give an enthusiastic thank you to everyone who contributed to this conference both scientifically and financially. Your dedication to this community had a direct impact on Cure HHT's ability to provide attendees with a rich and fulfilling experience. Your contributions are deeply appreciated by all!

  • Conference Program Executive Committee and Members
  • Invited Speakers
  • Judges and Session Chairs
  • Patients and Volunteers
  • Sponsors and Exhibitors
  • Donors who support Cure HHT and all of our research and education activities

 

Conference Program Exec. Committee

Conference Program Committee

Invited Speakers

HHT Patients

Conference Sponsors & Exhibitors

 

 

Hosting our First Blood Drive for HHT Awareness!

She wanted to give blood by the end, but she didn’t meet the weight requirement 😉

Since marrying into an HHT family, I have felt a need to do more to advocate for my family members, raise awareness, and help in any way I can. I know how precious both money and blood can be to this community, but we are not always in a financial position to give to the foundation (although every little bit really does count!). I decided to reach out to the local Red Cross and my church to coordinate a blood drive. I’d like to talk about this process, how surprisingly easy it can be, and tell you how everything went on the big day!

  • Reaching out to your local American Red Cross representative
    • You can Google this, or look it up on the Red Cross website: redcrossblood.org
    • In my first e-mail, I told my rep, Kristi, about HHT and how I felt like I wanted to do more to help raise awareness. I offered my assistance to volunteer with local blood drives and asked her how I could learn to coordinate one of my own.
    • She was SO NICE! Y’all – seriously, reach out to your local Red Cross folks – even if you don’t want to host a blood drive, just get to know them as your friend. I have never met anyone in this business I haven’t liked. They truly have a heart and soul for service.
  • Bringing awareness through an ‘In Honor of’ blood drive
    • Kristi told me about a campus-wide blood drive happening where I work at Kansas State University. While this drive was already planned and ready to go, they wanted to feature HHT to help bring awareness to the disease and the potential need for blood in the community because of it.
    • If you aren’t ready to coordinate your own blood drive, you can certainly raise awareness about HHT by making an already scheduled blood drive in honor or in memory of someone.
    • I filled out a form talking about my family, the disease, and our experiences with blood donation in the past. My husband and daughter have yet to receive blood transfusions, but my mother-in-law has and her father was reliant on them during the last years of his life.
    • The Red Cross and the campus newspaper did a short interview and press release detailing HHT and the need for blood in the HHT community.
  • Coordinating your own drive
    • If you are ready to host and coordinate your own blood drive, I would suggest getting these things in line:
      • A location
      • A few potential dates
      • A few volunteers to help schedule appointments/make signs/send reminder e-mails and calls/help on the day of the drive
    • Once you have an idea of the above information, tell your Red Cross rep you are ready! They will let you know what dates work best for their schedule and they almost literally do the rest!
    • Once we settled on a day that worked well for the church, Kristi told me what time, how many appointments we would have, and what to do every step of the way.
    • We started with a small drive – 2 Red Cross workers and 21 appointment slots. The drive went from 9am to 3pm this last Sunday.
  • Advertising your blood drive
    • Since we were having our blood drive at church, I asked the pastors if I could speak about HHT and the reason behind this blood drive during church service. They were more than happy to oblige and I just gave a quick 2-3 minute synopsis of HHT and why giving blood is so important, especially to those with diseases like HHT.
    • Kristi had already given me a sign-up sheet and reminder cards for donors. I set up a table in our church’s gathering place to book appointments, and I had almost every appointment booked by the end of that same church day!
    • Kristi had also given me some table toppers with information about the drive, flyers, and contact information sheets. They literally take care of everything!
  • Preparing for the drive
    • A few days before the blood drive, I entered everyone’s information into the Red Cross system. Blood drive coordinators get their own login so you can access appointment times, schedule donors, and send e-mails. All the flyers, advertisements, and resources are also available on the site.
    • Everyone was sent an automatic reminder e-mail about their appointment.
    • I asked my church group to volunteer to make goody bags for the donors. (Since this was a small drive specifically to raise awareness about HHT, I wanted to hand out some HHT information and some treats to donors as a thank you.)
  • Blood drive day
    • I arrived at the church at the same time as the Red Cross staff to help see them into the building.
    • They have everything so organized – the only thing I did was move around some chairs! They had their own tables, music, fans, water, food, and of course all the donation supplies.
    • I stayed at the drive to greet donors as they came in, to guide them to the sign-in sheet, and then I just chatted with them as they waited for their appointment! My job was by far the easiest!
    • At the end of the day, the staff packed everything up and went on their way! They were so nice and made every donor feel special and well taken care of.

Our first blood drive was a success and we met our blood donation goal! It really was surprisingly easy to coordinate and everything went really well! The Red Cross did 90% of the work, I really just found a venue and advertised it. I can’t wait to host another this fall! We are hoping to make this happen at our church every two months. This way, regular donors can continue to come back when they are eligible to give (after 56 days for a whole blood donation). If anyone has any questions about this process, let me know or reach out to your local Red Cross people!