What You Can Do for PNH Awareness Week | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

What You Can Do for PNH Awareness Week

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Introductory image: Dr. Margolis with Young Patient - High Five

 

Educate  

Educate others on PNH and bone marrow failure disease.  Here are some easy things you can do to teach others about bone marrow failure disease. 

  1. Educate yourself about paroxysmal nocturnal hemoglobinuria (PNH) on our Web site so you learn more about what you can tell others.  
  2. Tell at least one new person each day about your disease and what it is.
  3. Hand out AAMDSIF brochures to family, friends, colleagues, and neighbors.
  4. Hold a lunchtime talk at your office to educate others on PNH and how it affects you.
  5. Use social media to educate others by posting facts and information on Facebook, Twitter or Instagram. Direct others to learn more at www.AAMDS.org .    
  6. Send in your own story of your journey with PNH to publicize on our website.

Advocate 

Advocate for your own health — and advocate for all affected by bone marrow failure disease.  Here are some things you can do to advocate.

  1. Advocate for your own health.  Learn what you can do to be a strong and empowered patient for yourself or your loved one. 
  2. Spread the word about PNH by including the AAMDSIF logo and link to www.AAMDS.org on your email tagline, Facebook page, or other social media page.

Participate 

Participate in the March for Marrow/Walk for PNH 2016, a bone marrow/blood drive, volunteer at a drive, or organize your own awareness and/or fundraising event. There are many easy ways to participate in a local awareness event. Or, you can organize your own awareness or fundraising event. 

It can be as simple as organizing a bone marrow/blood drive, creating an AA&MDSIF FriendRaising page, giving a lunchtime talk at work, distributing AAMDSIF brochures at your local hospitals and hematology/oncology offices, holding a fundraising dinner at a local restaurants, or event organizing a walk.  Learn what you can do to make a difference!

  1. Register for the March for Marrow/Walk for PNH as a walker or a virtual walker
  2. Participate in an awareness activity. 
  3. Organize a fundraising event, big or small. Learn about all the different types of events you can plan.
  4. “Like” AAMDSIF on Facebook and follow us on Twitter, and Instagram (@AAMDSIF).

Celebrate and Commemorate

Celebrate your or your loved one’s survival story.  Share your journey.

Commemorate and remember loved ones lost. Honor this memory by telling their story.

  1. Create an AAMDSIF grassroots FriendRaising page to tell and share your loved one’s story.
  2. Buy a package of 10 Bravery awareness bracelets.  Hand them out and share your loved one’s story each time to someone.