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GIVING CHALLENGE

Get charitable this June! Every dollar you donate to the Canadian Marfan Association in June qualifies us to win $10,000!

Have you or a loved one or a friend been diagnosed with Marfan Syndrome or a related genetic disease damaging your heart’s aorta? Has it been difficult to find support and cope with the stress of “not-knowing” how to manage this rare disease? For over 29 years, the Canadian Marfan Association is the only organization in Canada striving to help relieve this stress, by educating the community and promoting medical resources for Marfan and other genetic aortic disorders.

As a charitable organization receiving no funds from any government source, the Canadian Marfan Association depends only on your donations to be able to function and provide support to the Marfan community.

This month, your generous donation can help us win $ 10,000. It’s easy! Make a donation to the Canadian Marfan Association by visiting

 

 www.givingchallenge.ca  #GivingChallengeCA

 

Every dollar you donate qualifies us to win $ 10,000. We humbly request you to help us support our Marfan community.

 

 

 
SAVE THE DATE!!!
September 26, 2015
 
The Canadian Marfan Association Conference is happening in OTTAWA this Fall...We look forward to providing an interesting and informative program for professionals and families at our bi-annual conference.
Check back soon for more details and registration information...
 
See you in September!!!

 
Important Message from The Marfan Foundation

A researcher is looking for participation in a research study and is willing to have international participation.  Please send this out to your membership and encourage participation.

Thank you.

  

Research on Post-Operative Outcomes of ACL Reconstruction

The Department of Orthopaedic Surgery at Johns Hopkins Hospital is currently investigating post-operative outcomes of anterior cruciate ligament (ACL) reconstruction in people with Marfan syndrome. More specifically, we are interested in studying rates of ACL re-rupture, results of laxity testing, lengths of rehabilitation times, and past/current functional status.

Very little attention has been given to this type of surgery and its outcomes in people with Marfan syndrome. As ACL repair is a relatively common procedure, this study will help inform our treatment approach for this injury and the practices that best lead to successful rehabilitation and mobility following surgery. If you have suffered an ACL injury requiring surgery once or multiple times, please consider being part of this study.

Participant Eligibility:

·         At least 18 years old

·         Undergone at least one ACL repair, regardless of date of surgery or type of reconstruction

This study will require participants to either send us relevant medical and surgical records or allow us to retrieve them from the healthcare institution, as well as complete two online questionnaires that collectively take less than 25 minutes to complete.

To obtain more information about this clinical study or to enroll, please contact Alim Ramji at 405-426-7803 or at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .

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Josephine Grima, Ph.D. │ Senior Vice President of Research and Legislative Affairs

516 883 8712 ext 117 │ 800 8 MARFAN ext 117

The Marfan Foundation

Know the Signs. Fight for Victory.

Marfan.orgFacebookTwitter

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Disclaimer: The Marfan Foundation is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a health care provider.  It is important to realize that information provided by the Foundation is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the Foundation is not a substitute for medical treatment or psychological care. It is vital that you talk with your health care providers regarding the diagnosis and treatment of Marfan syndrome and related disorders and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.

Health care provider information is supplied solely by the providers themselves and is not checked or warranted by the Marfan Foundation. The Foundation provides contact information for health care providers who are known to have seen patients with Marfan syndrome and related disorders. The Foundation does not endorse or recommend individual health care providers. You are responsible for interviewing and selecting the practitioner. By requesting health care provider resources you understand and agree that the Foundation and it’s affiliates are not responsible for any providers’ services or lack thereof.

  

 
2015 CMA - TMF Research Grant $100,000

The Canadian Marfan Association in partnership with The Marfan Foundation is proud to announce the annual Research Grant opportunity for $100,000. Both the Canadian Marfan Association and The Marfan Foundation co-fund the two-year faculty grant. For full details, deadlines, guidelines, and application, click here

Application Deadline April 27 2015 

 
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