2013 National Marfan Awareness Week

November 18 – 24

Help raise awareness of Marfan syndrome and genetic aortic disorders with the Canadian Marfan Association Marfan Heart Necklace. The Marfan Heart necklace was specially designed by Ann Wylie-Toal designed for patients with Marfan syndrome and genetic aortic disorders. Click here to read about the symbolism of the shape and stone.   

 $35 each, available in 12 kt gold plated or sterling silver

Fundraise in support of Marfan Awareness Week and spread the word!

Buy the perfect Christmas gift while helping the CMA increase awareness.  Orders must be received by December 1, 2013 to ensure Christmas delivery.  

Click for printable fundraising order form to take orders from family and friends.

How you can raise awareness during National Marfan Awareness Week: 

- fundraise for the CMA; sell Marfan Heart necklaces by printing the fundraising order form 

- share our awareness video www.marfan.ca/awareness and help us save lives. Help us ensure early diagnosis, prevent aortic dissection, educate patients and healthcare professionals, and fund research.

- share the Marfan syndrome QUICK FACTS below

- join the CMA's Facebook page at www.facebook.com/CanadianMarfanAssociation and share our page with your network 

- Make a donation at www.marfan.ca/donate and become part of a vigourous National charitably Association dedicated to   saving lives and improving the quality of life for patients and families affected by Marfan syndrome and genetic aortic   disorders; through our national programs of education, support, and research. 

Marfan Syndrome QUICK FACTS:

  • Marfan syndrome is a life threatening, genetic disorder weakening connective tissue throughout the body
  • Individuals with Marfan syndrome have multiple issues affecting all their body systems including: blood vessels, heart, lungs, eyes, spine, nervous system, bones and joints.
  • The most serious complication is a weakened aorta, susceptible to aneurysm (widening) and dissection (tearing); causing death when left undiagnosed and untreated
  • Marfan syndrome belongs to a larger group of genetic aortic disorders causing aortic complications
  • 1 in 5000 people have Marfan syndrome; even more have genetic aortic disorders. The incidence is still unknown
  • 9 of 10 individuals with Marfan syndrome have problems with their blood vessels and heart
  • Aortic dissection is deadly: Type A dissections, if left untreated, kill 33% of patients within the first 24 hours, 50% of patients within 48 hours, and 75% of patients within 2 weeks.
  • Early diagnosis saves lives: when diagnosed early, patients receive life saving treatments and can live a normal lifespan.
  • 1 in 2 people with Marfan syndrome, don’t know they have it
  • Marfan syndrome and aortic disease are hereditary; it can be passed to your children. Know your risks and family history of aortic dissection.
  • The Canadian Marfan Association funds a research grant annually, provides patients, families and medical professionals with support and education.

Knowing the signs saves lives.