GADA Canada would like to wish each and every one of our members a holiday season that is joyous and restorative. We hope you are able to spend the holidays in good health and good spirits despite the unusual circumstances that we find ourselves in this year.Every year we take time to acknowledge the strides that we have made in our mission to represent the interests of our membership.
This year, in the context of Covid-19 things have been challenging. However, just like you do every day, we have continued to push ahead.
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AWARENESS
It is with great pleasure that we are experiencing increased interest from the medical community and new levels of cooperation in clinics and research facilities worldwide.
Online support groups operated by members of the public are increasing in numbers. Though not established by GADA, this demonstrates increased public awareness of the conditions that we are advocating. Progress is being made every day and it is tangible!
Your ongoing support and donations, as well as the support of the Temerty Family Foundation, has helped to keep GADA moving ahead. Thanks to all who donated and will be donating. We recognize that financial hardship may make it more difficult to support charitable causes. Please keep us at the top of your list! Truly, thank you.
RESEARCH
GADA issued a call for participation in a neonatal Marfan research project. Dr. Dianna Milewicz and Alana Cecchi, MS, CGC, at the University of Texas Health Science Center at Houston are looking for individuals with neonatal or infantile Marfan syndrome.
Participants should be interested in participating in a research study looking at the medical complications of neonatal Marfan syndrome, including poor weight gain and appetite. The research study is still open for participation. If interested, please follow this link for further details: www.gadacanada.ca/neonatal-mfs-researchstudy
SUPPORT
The ongoing Covid-19 pandemic has seen communities in lock-down mode, hospitals filled to the brim and an unprecedented strain on the mental health of so many.
Neighbours have been isolated from one another, kids kept home from sport and activities, and those with disabilities or differences left behind in too many cases. Our membership is comprised of many who rely on community services and a robust healthcare system. Landing in hospital with Covid is a scary prospect indeed when one is already struggling with medical conditions.
Given the pandemic climate GADA focused much of our energy on patient support this past year. With limited resources, we continued to serve the needs of all those who reached out to us for support.
We also spearheaded the following initiatives:
- Sharing information on COVID-19 for people with genetic aortic conditions (www.gadacanada.ca/covid-19-gad)
- Commissioned and published an article about Dealing with Anxiety during a pandemic (www.gadacanada.ca/managing-anxiety-in-pandemic).
- Sharing research results that showed a decrease in surgeries for aortic dissection during the pandemic in New York. The purpose of this research was to appeal to patients with aortic disease to NOT HESITATE to seek medical attention should they experience symptoms of aortic dissection. In addition the study highlighted the importance of sharing family history with physicians when presenting to the emergency department with symptoms. (www.gadacanada.ca/2020-medical-attention-for-aortic-dissections-during-the-pandemic)
EDUCATION / EVENTS
GADA was involved in the planning and execution of two major events in 2020.
Unfortunately, the 2020 Heritable Aortic Disorders Symposium was postponed due to the pandemic and was replaced by a virtual conference that was planned and co-hosted by GADA during Aortic Dissection Awareness Week, Sept 19 – 26th, and was run in partnership with the John Ritter Research Foundation. The event featured a ‘Frequently Asked Aortic Questions’ video, peer support sessions, medical professional talks and workshops. If you are interested in listening to the medical day talks, they can be found at http://bit.ly/ADAW2020-Playlist
GADA also organized a virtual retreat for clinicians involved in the Montalcino Aortic Consortium (MAC) to discuss ongoing and future research priorities.
“The Montalcino Aortic Consortium (MAC, www.montalcinoaorticconsortium.org), an international scientific group associating numerous centers with expertise in heritable thoracic aortic disease, was formed in 2013 to setup a multicenter international registry of patients with genetically triggered thoracic aortic disease with a mission to define the optimal gene-based clinical management for these patients. MAC includes paediatricians, cardiologists, geneticists, and cardiovascular surgeons. GADA Canada is a co-founder and sponsor of this important research entity, MAC”
All through the pandemic, GADA continues to stay available to provide important updates and support to our community. With your support, we look forward to providing in the next year an enhanced research and education program, patient webinars, virtual heritable aortic disorders conference, workshops and support groups.
A gift to GADA this year, is something that connects us even when we can’t be together!
Thanks to a $20,000 Matching Gift Challenge by Casa Raia, Montalcino, any gift you make to GADA by December 31, 2020 will be DOUBLED!
We hope that you will support GADA Canada with a gift of $50, $100, $250, $500 or more today.