Hydrocephalus Awareness MATTERS!

Tags: , , , , , , ,

Hydrocephalus Awareness Month 2014September is HYDROCEPHALUS AWARENESS MONTH! This is our community’s month to stand tall and proud and let the world know we are HERE and that we matter. To celebrate the 30 days of September, below are 30 ways you can help raise awareness. These ideas extend beyond activities just for a given day or even this month. You will find ideas for ways to become more engaged throughout the year with peers and with our association. We hope we hear you raise your voice. We especially hope you join our amazing group of volunteers in helping make meaningful change for our community.

  1. RAISE YOUR VOICE! On September 18th, we will stand with patient advocates from over 250 other organizations to raise one voice to call on our nation’s policymakers to make funding for the National Institutes of Health (NIH) a national priority and to raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED. Join us for Capitol Hill Day and the Rally for Medical Research. We will schedule meetings both on Capitol Hill and in District Offices FOR YOU! Registration ends TOMORROW, September 5th. REGISTER TODAY! Learn more about the event on our RALLY for Medical Research 2014 page.
  2. COMMEMORATE 50 WITH $50.  On March 10, 1964, Dr. Hakim published his first thesis in Spanish on NPH, “Some Observations on C.S.F. Pressure. Hydrocephalic Syndrome in Adults with ‘Normal’ C.S.F. Pressure — Recognition of a new Syndrome.” In so doing, he formally recognized Normal Pressure Hydrocephalus as a treatable form of dementia, thereby opening the door for hundreds of thousands of individuals to be treated for a condition that was taking away their lives. Help HA support individuals with adult onset hydrocephalus and NPH through a commemorative gift of $50 so that we can continue to provide support services and resources as well as fund the critical work of our Adult Hydrocephalus Clinical Research Network. Click here to donate today!
  3. WALK TO END HYDROCEPHALUS. Join us as we walk to spread awareness and raise funds to improve the lives of individuals affected by hydrocephalus. The 2014 WALK season is in full swing!  You can find a list of HA WALK events happening around the country by visiting our 2014 WALK schedule. We hope you can join one of our WALKS. If there is not a WALK nearby, consider doing your own Virtual WALK.
  4. FLY THE COLORS! Change your personal Facebook banner for Hydrocephalus Awareness Month! Go to the HA Facebook page and under photos you will find the Awareness Month Banners photo album full of banners! Download the banner you love to your computer and then upload it to the cover photo area of your Facebook profile. Email if you have questions or need help. You choose how to sport and support!
  5. WHO ARE YOU? Change your Facebook profile pic for the month and spread awareness about hydrocephalus. We have created an album in Facebook called Awareness Profile Pics. Browse through, select your favorite, and change your profile pic! Every post, comment and reply will be a place you educate about hydrocephalus. Hydrocephalus awareness MATTERS!
  6. CONNECT WITH YOUR COMMUNITY! Join your Local Community Network! HA’s Community Network provides opportunities to get involved and connect at the local level. Our local networks host educational meetings, support group meetings, family fun events, and advocacy activities. Visit our website to find your local Community Network. If your area does not have a local Community Network, take the reigns and make a difference! We’d love to help you start one in your local community. Contact Megeen@hydroassoc.com to learn more.
  7. TRICK OR TREAT! No, it isn’t October (yet!) but it won’t be long!  The Hydrocephalus Association (HA) is actively seeking volunteers for its “Trick or Treat for HA” program. Learn more about how to start a Trick or Treat program at your local elementary school!
  8. KNOWLEDGE IS POWER! We are dedicated to providing essential tools and resources that enable you to have more control of your life. Learn about hydrocephalus, including treatment options and emergency medical situations. You can find publications about a variety of topics related to hydrocephalus including, headaches and hydrocephalus, being an active decision maker around your medical care, necessary legal documents, and more. All of our publications were created with input and extensive review by members of our Medical Advisory Board, so you can feel confident that the information is accurate and trustworthy. Click here to download all of the Association’s educational materials for FREE!
  9. SHARE THE FACTS. CHANGE THE FUTURE. Share statistics and facts about hydrocephalus with your family and friends. We will be posting facts about hydrocephalus on our Facebook and Twitter pages throughout the month. We invite you to share these with others. You can also find facts on hydrocephalus and on the brain in our Facebook photo albums.
  10. KEEP INFORMED. Every month we send out a monthly eNewsletter with the latest updates on hydrocephalus research, HA’s programs and events, and hydrocephalus in the news. If you have not signed up for our eNewsletter yet, or if you have stopped receiving it, please sign up again. All of our new website pages have a space to sign up for our newsletter!
  11. BE SOCIAL! One of the best ways to help spread the word and educate the general public is through social media. Connect with the Hydrocephalus Association on FacebookTwitterLinkedInYoutube, Instagram, Google+ and Pinterest. Don’t forget to tag the Hydrocephalus Association (@HydroAssoc on Twitter and Instragram) in your posts and tweets and to use our hashtags #HAM2014 and #hydrocephalus.
  12. CONNECT WITH YOUR INNER AUTHOR! We are building a library of individual stories to share on our website, with the media, and to the general public. Join others who have courageously shared their stories to raise awareness and fight for a cure! Email us at communications@hydroassoc.com and we can help you put your journey into words.
  13. TAKE CHARGE! Are you between the ages of 12 to 25? Take charge by joining HA’s Teens Take Charge (TTC) community! It’s time to let your voices be heard! For more information on TTC, click here. Don’t forget to “like” and “follow” TTC on Facebook and Twitter!
  14. LET OTHERS KNOW THEY’RE NOT ALONE! Too many individuals don’t know where to turn to find information and support when they first hear the word “hydrocephalus.” Let’s change that. HELP SPREAD THE WORD by distributing HA’s brochures to your local hospital, doctor’s offices, nursing homes, etc. To request materials for distribution, call us at 888-598-3789 or contact us by email at info@hydroassoc.com.
  15. VISIT YOUR LOCAL HYDROCEPHALUS LIBRARY! The Hydrocephalus Resource Library contains articles, blogs, research summaries, and full research studies. All of this information is at your fingertips and available to download for FREE. Search the library today!
  16. COMBINED FEDERAL CAMPAIGN SEASON. Are you a Federal employee? Member of the military? You can designate the Hydrocephalus Association for your tax deductible donation through your workplace. The Hydrocephalus Association number is CFC10066. Information on the CFC can be found here.
  17. START A TREND! What are you talking about with others around living with or supporting someone living with hydrocephalus? What are the burning questions out there about everyday life and decisions? The HA Staff and our Medical Advisory Board members are ready to address these important trending topics in short and informative articles. Driving, heat sensitivity, sleep overs, talking to co-workers…the topics are endless but we want to know what’s meaningful to YOU. Let us know, and if you are interested in writing, let us know that, too! Email jennifer@hydroassoc.com with your ideas.
  18. WHAT’S UP, DOC? Do you have a great neurosurgeon, neurologist, or neuropsychologist? Make sure they’re listed in our Physician’s Directory! Email jennifer@hydroassoc.com to learn how.
  19. CALLING ALL WEBSITE ENTHUSIASTS! Add the Hydrocephalus Resource Library button to your site! There’s nothing more powerful than spreading the gift of knowledge. Email communications@hydroassoc.com to learn how to add our button to your website.
  20. MEDIA MATTERS. The article in the Wall Street Journal, The Challenges After Surviving a Childhood Disease, puts on the national stage an issue that has been a growing concern for many in our community –  the difficulties in transitioning from pediatric- to adult-centered care for the on-going management of hydrocephalus. The article features 21 year-old Adrienne D’Oria of New Jersey who openly shared her challenges with the transition. Write your story or the story of a friend or family member (with their permission!) and submit it to the editor of your local newspaper…and then don’t be surprised if they call you back for an interview! Our Communications Director is here to help you with the press. Email amanda@hydroassoc.com.
  21. “YOU CAN NEVER CROSS THE OCEAN UNTIL YOU HAVE THE COURAGE TO LOSE SIGHT OF THE SHORE.” Read one of our many inspirational stories about teens and young adults who have hydrocephalus or know someone who does, how it affects their lives, and how they deal with it. Their weight can be heavy but we’ve yet to see a smile tarnish. Click here to visit our Teens Take Charge blog.
  22. TAKE IT TO THE NEXT LEVEL! Do you participate in marathons, triathlons, or other extreme sports? You can get that adrenaline rush you love while raising money for the HA! Sign up by visiting our Extreme Athletes page. Your next challenge is just around the corner.
  23. “THE BEST WAY TO FIND YOURSELF IS TO LOSE YOURSELF IN SERVICE TO OTHERS.” There are so many ways to volunteer within our community. You can volunteer your time to a local Hydrocephalus Association event, help create shunt pins or even make Boozle the Bear. If you’re a real go-getter, set up a fundraiser today! To learn more about how you can become involved, click here or contact info@hydroassoc.com.
  24. GIVE THE GIFT OF HOPE. Donate to HA’s research campaign, A Reason for Hope. Your research dollars are used to support our research grants, the Hydrocephalus Clinical Research Network (HCRN), the Adult Hydrocephalus Clinical Research Network (AHCRN), and workshops and conferences that unite the leading minds in hydrocephalus research. To make a contribution, click here.
  25. BE AN ADVOCATE FOR CHANGE! The Hydrocephalus Action Network (HAN) is a grassroots network of volunteers “at the ready” who are willing to take action to help the Hydrocephalus Association advocate on behalf of all those affected by hydrocephalus. The best advocates are the patients, family members, medical caregivers, and others directly affected by the condition – WE NEED YOU! Join HAN today!
  26. QUIET ON SET…ROLL IT…ROLLING…TAKE 1…and ACTION! Watch some of our videos to further educate yourself; and while you’re at it why not pass the gift on and share it with others! Visit our YouTube station today!
  27. LEAVE A LASTING GIFT. The Fudge Solomon Legacy Society provides an opportunity for supporters to ensure the association’s research, support, advocacy and education programs continue into the future through a gift to HA in wills, trusts or estate plans. For more information, please email development@hydroassoc.com.
  28. BECOME A LEADER! Are you interested in becoming a leader for the cause? Contact us! We are always looking for passionate, dedicated volunteers to help us expand our Community Network and WALK program. Our staff can provide you with all the resources you need to get started and there are a rich group of seasoned volunteers ready to help you at every turn. If you are interested in leading a WALK please contact WALK@hydroassoc.com. If you are interested in leading a Community Network please contact Megeen@hydroassoc.com.
  29. BE PROUD! Join us on Facebook and tell us other things you have done this month to raise awareness of hydrocephalus. Don’t forget to tag the Hydrocephalus Association and use our hashtags, #HAM2014 and hydrocephalus.
  30. “THE TRUE SIGN OF INTELLIGENCE IS NOT KNOWLEDGE, BUT IMAGINATION.” The ALS Ice Bucket Challenge proved that one idea from a dedicated member(s) of a community can make a huge difference. We want to hear your ideas to help the cause! E-mail us at info@hydroassoc.com.

For 31 years the Hydrocephalus Association has been providing one-on-one supporta national community support networkpublications and resources on hydrocephalus, access to our Medical Advisory Board comprised of leading neurosurgeons and neurologists across the U.S. and Canada, biennial national conferences, advocacy initiatives, and a strategic research agenda, which has invested over $3 million since 2009. None of this would have been possible without the generous support of our community. The fight does not stop here nor does it stop today or this month. Let’s keep moving forward together!

There are no comments published yet.

Change this in Theme Options
Change this in Theme Options