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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 

 
HELP US HELP YOU
Did you know…?

·        The Canadian Marfan Association receives absolutely NO money from any government source

·        Every dollar we receive comes from our supporters and friends

·        Now, more than ever, we are counting on your generosity so that we can continue to support our Marfan community with:

o   information,

o   research,

o   clinic development and,

o   advocacy.

Our impact is real, and so is our need. With your ongoing financial support we will be able to sustain important information messaging to our Marfan community. We will keep dollars flowing to very promising research work directly related to genetic aortic disorders.

Our need is real…our message is simple…we need your donations to keep up the good work and accomplishments of our researchers, volunteers and staff.

 

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Your Canadian Marfan Association also…

·        Continues to benefit from professional guidance and up-to-date medical information regarding Marfan and all other genetic aortic disorders.

·        Continues to fund promising research projects through our international relationships with other Marfan organizations.

·        Continues to help the Canadian medical community keep Marfan and other equally concerning genetic aortic disorders in mind as they assess patients’ medical histories, in light of their current medical concerns.

·        Brings together the Marfan community on a bi-annual basis at a national conference…September 26, 2015…in Ottawa…watch our website for information www.marfan.ca

 
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!!!

 
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