On September 1st, the Montreal Heart Institute unveiled the Cardiovascular Genetics Centre - a new clinic tasked with detecting heart issues that are often left undiscovered until they become problematic.
Dear Loeys-Dietz community,
We are a group of researchers from the University of Michigan interested in fighting Loeys-Dietz syndrome (LDS). I have been operating on LDS patients with aortic aneurysms or dissections, but I believe the best way to treat this illness is with prevention. This is why we are pursuing research into LDS by using patients’ blood to generate induced pleuripotent stem cells to study the mechanisms of aortic aneurysm and dissection in LDS patients.
Research Focus: Our team is interested in studying the mechanisms of aneurysmal formation in LDS patients. LDS is associated with mutations of genes in the TGFb pathway; however, the precise mechanisms explaining how mutations in these genes cause aortic aneurysms and dissections are still unknown. Currently, there is no medical treatment to prevent aortic aneurysm and dissection in LDS patients. Our focus is to study the detailed mechanisms, and hopefully, develop new therapies to prevent aneurysms and dissections in LDS patients.
Patient population needed for the research: We would appreciate participation from LDS patient with known mutations in the TGFB2, TGFB3, TGFBR1, TGFBR2, SMAD3, or SMAD4 genes, or any other mutations of the...read more
Congratulations to Dr. Hal Dietz for his receipt of the 2015 Research Achievement Award presented by the American Heart Association at the American Heart Associated Sceintific Sessions 2015 in Orlando, Florida.
On behalf of the entire team at the Loeys-Dietz Syndrome Foundation Canada, congratulations Dr. Dietz!
Photo copyright American Heart Association/Todd Buchanan 2015
This past October 18th 2015, our very own Doctor Sarah Bowdin ran the Scotiabank Toronto Waterfront Half-Marathon to raise awareness of Loeys-Dietz syndrome and funds for the Foundation. Doctor Bowdin is a staff physician in the department of Clinical and Metabolic Genetics at the Hospital for Sick Children in Toronto, and is a member of our Medical Advisory Council (MAC). Thank you, Doctor Bowdin, and Go Go Go! Thank you everyone for your support!
On June 25th, the family and friends of Nik Dragicevik came together in Detroit to honour Drs. Hal Dietz and Bo Yang for their dedication and commitment to Loeys-Dietz research. Over 150 people attended the event, and funds raised will be earmarked for the Foundation’s Young Investigators’ Award Program. Well done to all those involved in the organization of this wonderful event.
Over the past six months, volunteers Tom Galli and Lindsay Parsons have been building a database of all the research on Loeys-Dietz syndrome, and of the researchers and collaborators involved. Approximately 2,500 articles have been published across 250 medical journals in 25 countries. This database will be an important building block for the Young Investigators’ Award Program. Thank you for all your hard work!read more
Madame Gail Ouellette, president and C.E.O. of Regroupement québécois des maladies orphelines (R.Q.M.O.), the Quebec rare illness network, was recently honoured at Université du Québec à Montréal's fifteenth Alumni Recognition Gala for her exceptional personal and scientific involvement in the world of rare illnesses, and her career that took her from the world of the laboratory to the world of patient care. The R.Q.M.O. recently opened a Rare Disease Information and Resource Centre, a first of its kind in Canada.
Congratulations, Madame Ouellette, and thank you for your dedication to the cause of rare illnesses in Quebec! Visit the R.Q.M.O.’s website to find out more: www.rqmo.org.
Gail Ouellette honoré pour son dévouement à la cause des maladies rares
Madame Gail Ouellette, présidente et directrice générale du Regroupement québécois des maladies orphelines (R.Q.M.O.), était l’une des lauréates à l’honneur lors du quinzième Gala Reconnaissance de l'UQAM, le 26 mai dernier. Madame Ouellette a été honorée « pour son cheminement qui l’a menée des laboratoires aux patients, son investissement dans l’univers des maladies rares et pour son exceptionnel engagement scientifique et personnel. » Le R.Q.M.O. a d'ailleurs, depuis quelque temps, un centre d'information et de ressources sur les maladies rares, une première...read more
The second annual Nik Dragicevic Memorial Tournament was held in Windsor, Ontario from May 8th to 10th. This event remembers a remarkable individual by bringing together people to do what he loved most, spend time with family and friends, and play basketball. This year, organisers were thrilled to have more than 55 teams participate in the three-day tournament, and more than 500 people gather together in the evening to celebrate the weekend. Nik's name will forever be spoken with love, and his family and friends are working hard to raise awareness and research funds for the Loeys-Dietz Syndrome Foundation Canada in his honour. For more information, and pictures, please visit http://www.ndmt42.com. Thank you to all those who worked to make this tournament a reality!read more
This past May, the Foundation launched a brand new website in accordance with its organizational rebranding efforts. The site now serves as the main hub for up-to-date information on medical insights, patient tools, community events, research opportunities, useful videos, and much more. Special thanks to web developer extraordinaire George Petridis for volunteering countless hours to make this project a reality. Check it out today!
Un nouveau site web
En mai dernier, la Fondation a procédé au lancement de son tout nouveau site Web, dans le cadre des mesures prises pour renouveler son image. Ce nouveau site sera LA source où trouver l’information la plus à jour sur les données médicales, les événements de la communauté et les initiatives de recherche, des outils pour les patients, des vidéos et des liens utiles, et bien plus. Nous souhaitons remercier George Petridis pour les nombreuses heures qu'il a consacrées à la réalisation de ce projet. Visitez le nouveau site dès aujourd’hui!
Veuillez cependant noter que le volet francophone du site Internet n’est pas encore terminé. Vous souhaitez nous aider à traduire et réviser le nouveau site? Écrivez-nous au firstname.lastname@example.org.
The conference addressed the integration of new genomic technologies into the healthcare system, at the level of practice and policy, including implications for patients and families, clinicians, health care systems, and society.read more