30 is the Magic Number THIS Hydrocephalus Awareness Month!

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Surgery Profile PicBy Jennifer Bechard, Support Group Liaison

This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the many faces of hydrocephalus, and to unite with us to create one strong voice of awareness. Hydrocephalus Awareness Month is a time that individuals and like-minded organizations can unite in our mission to eliminate the challenges of hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus in both our own circles and to the larger networks of which we are a part. This month is also a great time for us to challenge ourselves to find new ways to get involved in raising awareness through education and advocacy activities.

Are you visiting us for the first time? Welcome! Whether you were brought here out of personal curiosity or because you or a loved one is touched by hydrocephalus, please learn more about hydrocephalus and the Hydrocephalus Association while you’re here on our website, and join us by taking part in one or more of the actions below!

Celebrate Hydrocephalus Awareness Month!

Commemorate 30 years of service by the
Hydrocephalus Association to our community!

30 is the magic number this month.

Here are 30 Ways YOU can make an impact:

1. 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. Join our family today!

2. $30 FOR 30: For 30 years the Hydrocephalus Association has been providing one-on-one support, a national community support network, publications and resources on hydrocephalus, access to our Medical Advisory Board comprised of 19 of the leading neurosurgeons and neurologists in the country, biennial national conferences, advocacy initiatives, and, more recently, a strategic research agenda, which has invested $2.4 million since 2009. None of this would have been possible without the generous support of our community. Commemorate our anniversary through a gift of $30. That’s $1 dollar for every year of HA’s work towards eliminating the challenges of hydrocephalus. Let’s keep moving forward together! Click here to donate today!

3. KNOWLEDGE IS POWER: We have downloadable publications on a wide range of topics including what is hydrocephalus, living with hydrocephalus, being an active decision maker around your medical care, necessary legal documents, and more. All of our original 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!

4. CONNECT AND LEARN: Have you registered for our Support and Education Webinar Series? Sign up today and share this great opportunity with friends, family, coworkers and medical professionals. Our first webinar, “What if it isn’t Alzheimer’s or Parkinson’s?” will be held on Tuesday, September 10, 2013 from 5:00 – 6:00 pm. To register and learn more, click here.

5. WALK TO END HYDROCEPHALUS: The 2013 WALK season is in full swing! You can find a list of HA WALK events happening around the country by visiting our 2013 WALK schedule. We hope you can join one of our WALKS. If there is not a WALK nearby, consider doing your own Virtual WALK.

6. BE SOCIAL: Connect with the Hydrocephalus Association on Facebook, Twitter, LinkedIn, Youtube and Pinterest.

7. 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!

8. 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.

9. THERE IS NO KNOWLEDGE WITHOUT UNITY! Join your Local Community Network! If your area does not host community meetings or does not have a support group, take the reigns and make a difference! We’d love to help you start one in your local community. Contact info@hydroassoc.com to learn more.

10. “THE TWO MOST IMPORTANT DAYS IN YOUR LIFE ARE THE DAY YOU ARE BORN AND THE DAY YOU FIND OUT WHY.” Many members of our community have found they can make a difference simply by telling their story and asking elected officials for support. Become an advocate for hydrocephalus. Visit your Congressional Representative in your local community and let’s make a difference together! For tips, tools, and support visit our Advocacy Toolkit.

11. “THE BEST TIME TO PLANT A TREE WAS 20 YEARS AGO; THE SECOND BEST TIME IS NOW.” 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!

12. “A LIBRARY OUTRANKS ANY OTHER ONE THING A COMMUNITY CAN DO TO BENEFIT ITS PEOPLE.” Andrew Carnegie couldn’t have said it better. The Hydrocephalus Resource Library is updated weekly with 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!

13. 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 info@hydroassoc.com and we can help you put your journey into words.

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. 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, the formation of the adult-focused clinical research network, and workshops and conferences that unite the leading minds in hydrocephalus research. To make a contribution, click here.

16. CALLING ALL WEBSITE ENTHUSIASTS! Add the Hydrocephalus Resource Library button to your site! There’s nothing more powerful than spreading the gift of knowledge. Click here to learn how to add our button to your website.

17. MEDIA MATTERS. When 13 year-old Giana DiLascio met Justin Timberlake, her personal story of living with hydrocephalus quickly hit the major news outlets. In a piece by the Huffington Post, she stated that, despite never having shared her story before, she realized what a difference she could make in the lives of others by helping raise awareness about hydrocephalus. Write your story or the story of a fellow friend or family member and submit it to the editor of your local newspaper…and then don’t be surprised if they call you back for an interview! Here are some great news pieces we have had recently appear in various press outlets around the country.

Current Chicago WALK Chair Featured in Local News

Teen-led WALK Brings Together 100 People

Houston WALK Raises Awareness for Hydrocephalus in Local Media

Children and Adults Facing the Challenges of Hydrocephalus

 18. “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 of all ages 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.

19. 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.

20. 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.

21. HE ROCKS IN THE TREETOPS ALL DAY LONG…TWEET TWEET TWEET! One of the best ways to help spread the word and educate the general public is by RE-TWEETING our tweets to the Twitter world! Don’t forget to tag @HydroAssoc in your tweets and use our hashtag, #HAM2013. We’re really gonna rock this 30 days!

22. “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.

23. SET SAIL FROM SAFE HARBOR AND CATCH THE TRADEWIND TO DISCOVERY AND FRIENDSHIP! Visit our calendar of events to see what’s happening in your area or around the country.

24. CAN’T HIDE THAT PRIDE! Wearing your hydrocephalus swag is a great and easy way to inform others. Visit our online store today! We carry hats, pins, bears, TTC shirts, WALK memorabilia and more!

25. 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!

26. 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!

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. “YOU CAN TURN PAINFUL SITUATIONS AROUND THROUGH LAUGHTER. IF YOU CAN FIND HUMOR IN ANYTHING, YOU CAN SURVIVE IT.” Honestly, we couldn’t let this month pass without thinking about two individuals who have made us laugh throughout the years at our national conference. Tom Smith and Sam Marks, our resident comedians, this one is for you two! Coordinate a fundraiser at a local comedy club to help raise awareness, funds and laughs for hydrocephalus. What a great idea for a SHYMA get-together!

29. 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, support group or want to learn more about other volunteer opportunities at HA, please contact info@hydroassoc.com.

30. “THE TRUE SIGN OF INTELLIGENCE IS NOT KNOWLEDGE, BUT IMAGINATION.” We want to hear your ideas to help the cause! E-mail us at info@hydroassoc.com.

The fight does not stop here nor does it stop today or this month! Join us on Facebook and tell us other things you have done this month to raise awareness of hydrocephalus.

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