Saturday, September 1, 2012

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month and while hydrocephalus and hydranencephaly are two very different diagnoses, they oftentimes reside together in the lives of our little bees. 

Stay tuned the rest of the month for more details on hydrocephalus in the lives of our hydran-families. And please consider changing your Facebook Timeline picture to our custom banner:

Here are some other ways you can be involved, from
Hydrocephalus Association
visit their web site
Here’s a list of 20 things you can do to raise awareness and make a difference throughout the month of September. We hope this inspires you to think of even more!

  • Become informed and stay connected. Sign up for e-mail alerts from HA – news, research updates, advocacy opportunities and education and support information.
  • Make a donation to the Hydrocephalus Association. Click here.
  • Stay up-to-date through social media. Visit the Hydrocephalus Association on Facebook, Twitter, and YouTube. Don’t forget to “Like” us and “Follow” us!
  • Change your personal Facebook banner to a Hydrocephalus Awareness Month banner. On our HA Facebook page, there will be a photo album with banners you can choose from to download to your computer and then upload as your personal Facebook banner. Change them throughout the month…or throughout the year!
  • Share statistics about hydrocephalus with your family and friends. We will be posting statistics and facts on our Facebook page throughout the month that you can share.
  • Share the Hydrocephalus Resource Library with someone today (a friend, a doctor, a teacher, your Facebook community…). Click here to access the Library.
  • Have a website or blog? Add the Hydrocephalus Resource Library button.
  • Watch and share these videoson our YouTube page.
  • Support A Reason for Hope research campaign. 
  • Remember HA in your will and join the Legacy Society, our planned giving program. 
  • Learn, share, come together! Find a support group in your community! Click here. If there isn’t one, think of starting one. Contact Jenn at to find out how.
  • Are you between the ages of 12 to 25? Join our Teens Take Charge (TTC) program. 
  • Make a difference one step at a time with the Hydrocephalus Association by joining a WALK in your area. If there is not a WALK nearby, join HA’s virtual WALK.
  • Participate in a marathon or another extreme sport for HA. Visit to learn more.
  • Visit your Congressional representative in your local community. Look for our upcoming blog on tips for advocating for hydrocephalus with elected officials.
  • Distribute brochures with important information about hydrocephalus to your local hospital, neurosurgery office, nursing home, doctor’s office., or senior citizens center. If you need brochures, call us at 888-598-3789 or email us at to request materials.
  • Use a greeting card designed by a child with hydrocephalus  for all your correspondence this month. To see the designs, visit our online store here.
  • Wear a clothing item with hydrocephalus on it (a hat, a t-shirt, a tote bag) at least once a week this month. Wear a hydrocephalus awareness pin everywhere you go! Don’t have one? Visit our online store here.
  • Give a Boozle Bear to someone you love, or explore giving one to a local NICU or PICU where it can be gifted to the family of a child with hydrocephalus.
  • Share your story! We are building a library of stories to share within our community as well as with the media and on the web. Would you like to share how hydrocephalus has affected you? Email us at and we can help you put your journey into words.

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