In 2010, the Turner Syndrome Society of the United States created the first Turner Syndrome Awareness Month in the month of February and launched a nationwide grassroots campaign across social media and engaged the TS community by sending awareness buttons with the TSSUS butterfly icon and "Short Happens" to all TSSUS members.
Since then, February has become generally accepted across all TS organizations and the TS community as Turner Syndrome Awareness Month. Each February, TSSUS creates a new awareness t-shirt and campaign.
This year, the theme is "Be Uniquely You" and TSSUS created an online Turner Syndrome Awareness Month Kit to not only help raise awareness but also to celebrate each and every one of you who lives with TS every day, because you are wonderfully UNIQUE!
Click the link to participate by:
1) Sharing your "My TS Story" for the TSSUS Blog
2) Post a selfie with the "Be Uniquely You" campaign selfie sign
3) Submit your artwork in the Coloring Page activity
4) Submit your photo for the "Be Uniquely You" social media campaign
5) Create a TSSUS Facebook fundraiser to raise critical funds and awareness for TS and TSSUS
6) Post and share the Turner Syndrome Fact Sheet across your social media channels, and share it with family, friends, healthcare providers or teachers
7) Fly your Butterflies! Wear your TSSUS and TS merchandise with joy! A TSSUS or butterfly shirt can often open the door to a conversation that can educate and raise awareness about Turner syndrome. Represent during TS Awareness Month!
Visit the TSSUS Awareness Month Page
This new collaborative aims to engage patients with type B aortic dissections (TBAD) as partners in patient-centered outcomes research. This work is funded by a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award.
As you may know, patients with TBAD face dramatically different options for care without strong evidence for the long-term consequences of those options at an individual level. What is absent in the decision-making process in this complex landscape is the patient’s voice. Providing opportunities for patient involvement will help ensure the patient voice is well represented in research related to TBAD.
The TBAD Collective is launching a patient survey for the Type B aortic dissection community. It is a confidential survey meant for patients with a diagnosis of TBAD. The goal of the survey is to get a better understanding of the TBAD community and what our needs are. From there, the team will determine the most important research items to pursue next in Type B aortic dissection.
The more patients we have participate in the study, the more the Collective will learn! We look forward to pushing TBAD research further, bringing our community closer together, and raising awareness about the important issue of aortic dissection.
Learn more and access the survey here
Click the link below to read the first newsletter of 2020 from the John Ritter Research Program and learn more about recent updates in aortic and vascular disease research and how to get involved!
JRRP January 2020 newsletter.pdf
We’re pleased to announce GenTAC Alliance Clinical Science Working Group Vice Chair, Sherene Shalhub’s receipt of two research awards.
Eugene Washington PCORI Engagement Award: Engaging Patients with Type B Aortic Dissections as Partners in Patient-Centered Outcomes Research.
With this two-year, $250,000 award, Dr. Shalhub is studying patients with type B aortic dissection (TBAD) who face complex decisions with regards to the management of their aortic dissection. The objective of this initiative is to build a collaborative aortic dissection research infrastructure that will facilitate patient centered outcomes research training, support, and networking among patients with TBAD, surgeons, cardiologists, researchers, industry stakeholders, and patient advocacy groups. The main outcome of this work is to assemble a broad network of patients with TBAD and stakeholders, who are well informed and who will guide the research prioritization in TBAD research.
Dr. Shalhub and her collaborators anticipate that as they work together, they will identify findings that are relevant to daily clinical practice and can be immediately adapted for wide dissemination and will identify TBAD related knowledge gaps that would benefit from patient centered outcomes research and comparative effectiveness research. Creation of the community will also allow us to evaluate patients’ willingness to participate in future randomized TBAD related research studies which are very much needed for this disease process.
The award time: 8/1/2019-7/31/2021
Vascular Ehlers-Danlos Syndrome Patient-Centered Research Conference award.
This is a one year $50,000 Eugene Washington PCORI Engagement Award that builds on the successful work of creating the Vascular Ehlers-Danlos Syndrome collaborative which was funded by the PCORI Tier A Pipeline to Proposal award in October 2017. The goal is to bring a much larger stakeholder group together (patients, advocacy organizations members, physicians, researchers, and industry) and review the questions feasibility to create feasible patient centered outcomes research (PCOR) and comparative effectives research (CER) projects eligible for funding.
This award time is 2/4/2019-2/3/2020
Website: https://www.vedscollaborative.org/
New review by Marion A. Hofmann Bowman, MD, PhD; Kim A. Eagle, MD; Dianna M. Milewicz, MD, PhD on the the results of clinical trials using β-blocker, losartan potassium, and irbesartan in patients with Marfan syndrome and comments briefly on mechanisms of aortic remodeling, including fibrosis and transforming growth factor β signaling.
Update on Clinical Trials JAMA Journal 5/9/19Check out Dr. Kim Eagle’s presentation at American College of Cardiology Annual Scientific Sessions 2019 titled, “Acute Aortic Dissection: Lesson Learned from 9000 Patients Presentation. Dr. Eagle outlines how approaches to diagnosis, treatment, and outcomes of acute aortic dissection have changed over the last 25 years. He reflects on what we have learned and where we need to go in the next 25 years.
Lessons Learned from 9000 Patients Presentation