It’s AVM Awareness Month and, like Brain Aneurysm Awareness Month, we will concentrate on education, solidarity and sharing. We're still encouraging you to share our graphics, tools and information, and we'll have a Toolkit, calendar of events, and all of the other resources you have come to expect. But, we intend for this month to be different too. We hope to highlight that, unlike aneurysms, AVMs (arteriovenous malformations) are considered a RARE DISEASE affecting 18/100,000 in the US alone. As a rare disease, AVMs bring with them a whole host of complications that aneurysm patients never face causing us long ago to adopt the motto: It's only RARE until it happens to YOU.
Follow along on Facebook and check out this page for the AVM Awareness Toolkit, calendar of events and more. Updates happen throughout the month!
We hope you'll turn October GREEN as we stand #UnitedAndRare during AVM Awareness Month!
During AVM Awareness Month, we receive many generous donations for which we are grateful, donations that go toward long-term goals such as our Annual Awareness Walk or Cerebrovascular Research Grants.
This year we wanted to return that generosity with a bit of instant gratification, a gift we hope will increase your opportunities to share with others and to spread awareness!
For every donation of $25 or more made in October... TAAF will gift one Awareness Toolkit containing:
10/3 It's #TrailblazerTuesday when we feature folks doing amazing work in research, awareness and advocacy. Meet Dr. Nina Moore of the Cleveland Clinic, our first EVER female #AVM researcher. We congratulated Dr. Moore in August, but her work is groundbreaking as she is trying to answer the question: What would you do if you could predict when an AVM ruptures? Learn more about the research that YOU funded and the amazing woman standing #UnitedAndRare during #AVMAwarenessMonth.
10/10 This #TrailblazerTuesday we’re introducing you to folks who keep it #UnitedAndRare, in fact the rare of the rare where AVMs are concerned. Meet Cure HHT, pioneers in answering the question: “Is my AVM hereditary?” Understandably, patients want to know, and generally speaking, the answer is no—AVMs are not hereditary. However, in the case of someone with HHT (Hereditary Hemorrhagic Telangiectasia), it can be passed down. Commonly characterized by nosebleeds and distinctive red spots, people with HHT have a tendency to form blood vessels that lack normal capillaries between an artery and vein which, for some (not all), can manifest as an AVM in one or more organs.
Under the auspice of the HHT Foundation, CureHHT’s entire mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT. Spread the word this #AVMAwarenessMonth; click here to learn more about CureHHT https://curehht.org/
10/17 On #TrailblazerTuesday we feature folks doing amazing work in research, awareness and advocacy. Meet Angela of California Action Link for Rare Diseases (CAL RARE). CAL RARE is dedicated to improving the lives of rare disease patients in California, and via their work at the state capitol, hopefully ALL of us affected by rare diseases like #AVM. A longtime #TAAFWalk-er, Angela was recently nominated for a Rare Voice award by the Rare Disease Legislative Advocates for her work organizing a Rare Disease Caucus and will attend their annual ceremony next month. Follow the new Facebook page here: http://bit.ly/CalRare to stay abreast of opportunities to shine your #UnitedandRare ideas and shape rare disease policy!
10/24 This #TrailblazerTuesday we recognize a group for whom #UnitedAndRareis understood at its roots: Meet Rare Disease Day. (Can you meet a day?) Started in 2008 by EURORDIS - European Rare Diseases Organisation and its Council of National Alliances, #RareDiseaseDay occurs annually on the last day of February, and the "main objective..." "is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives."