Facebook has become a powerful tool not only for connecting with friends and loved ones but especially for fundraising. That’s why we encourage you to raise money for your WALK to End Hydrocephalus team by setting up a Facebook Fundraiser.

To ensure that the money you raise through your Facebook Fundraiser gets credited to your WALK to End Hydrocephalus efforts, you must set it up through your individual Participant Center. The process is fast and easy!

1. Register for the WALK to End Hydrocephalus closest to you or our virtual WALK and set up your fundraising page.
2. Go to your WALK Participant Center by logging in (on the WALK page, the one you registered for) and clicking the “Participant Center” button.
3. From your WALK Participant Center, click on the “Connect Fundraiser to Facebook” button to connect your WALK page to your Facebook account.
4. Your Facebook Fundraiser will post on your page but to maximize the number of friends you reach, go to your Facebook and update your photo and message on the fundraiser. Remember to explain your personal connection to the cause and why you need their support.

Tips to Make Your Facebook Fundraiser Successful:

Re-Share your Facebook Fundraiser on Facebook at least once every two weeks. Update your photo or video – perhaps a video saying why this cause is important.

Your page will be more noticeable if friends see a picture of you or a loved one instead of a generic photo.

Tell your Facebook followers that donations help fund HA research as well as programs that provide support, education, advocacy, and awareness.

Keep everyone up to date on how much is needed to meet your fundraising goal. Make sure to continue to publicly thank people when they contribute!

Sample Facebook Post:

Hi friends! I’m raising money for the Hydrocephalus Association because my daughter/son was born with hydrocephalus, which has no cure and can only be treated through brain surgery. My child has endured 10 brain surgeries! The Hydrocephalus Association is the nation’s leading nonprofit funder of hydrocephalus research and they provide free support and education to families like mine. Help me find a cure for this condition by donating to my fundraiser! Thank you! [INCLUDE LINK TO YOUR FACEBOOK FUNDRAISER]

Download Facebook Toolsheet

Use the ideas below to increase your personal or team total for the WALK to End Hydrocephalus! Start now and remember: they can’t say “yes” until you ask!

1. Make Your Own Contribution – Lead the way by making your donation first. (Hint: Your personal donation “sets the tone” for the donations others make. If your personal donation is $25 or more, your donors are more likely to make similar contributions).
2. Ask – Ask 20 people for $10 each!
• Doctors: Dentist, Chiropractor, Orthodontist, Dermatologist, etc.
• Neighbors.
• PTA/school organization friends.
• Religious schools/organizations you belong to.
• Sporting team you or your family members belong to.
• Coworkers, colleagues, clients- think of all the people you interact with at work.
• People who do work for you: Cleaning service, Lawn service, Pool service, Handyman, Electrician, Plumber, Auto Mechanic, etc.
3. Download our WALK to End Hydrocephalus Mobile App – Available in Google Play or Apple App Store. Share your personal link via text.
4. Ask Electronically – Utilize great tools from your WALK to End Hydrocephalus Participant Center. When you register to participate and/or create a team, your own personal WALK webpage is automatically created. Edit your personal page and team page to share your story — your “why” — your family’s reason for supporting HA. Your WALK webpage also has templates for emails making it easy to send a request to family and friends or write your own email. Your family and friends can donate to you using a credit card. It’s as easy as that!
5. Ask Using a Letter Writing Campaign – Send a letter telling your family’s personal story – how hydrocephalus has affected the lives of everyone in your family – and ask for support! Be very real about the challenges of living with hydrocephalus. Send your letter via postal mail or email, but send your letter to everyone you know. (Tip: With a mailed letter, enclose a self-addressed return envelope to make it easy for supporters to send you a check!) A complete guide to conducting a letter writing campaign – including sample letters – is available on HA’s WALK Resources webpage.
6. Host a Fundraiser – at a local establishment or home business. Many businesses will host a ‘give back’ night where a percentage of proceeds are donated to a non profit. Examples include: Pampered Chef, Chipotle, Painting with a Twist, MOD Pizza, Buffalo Wild Wings, etc.
7. Bake Sale – An oldie but goodie! Give Mrs. Fields or Famous Amos a run for their money — host a bake sale with you and your friends. Ask if you can hold it at work. Or you can even hold it in conjunction with your garage sale. (If you aren’t a baker, ask local bakeries or retail food stores to donate products to sell!)
8. Bartender – Ask your local bartender to donate a portion of one day’s tips. You can create a sign for the bartender to place on the bar stating, “A portion of all tips collected tonight will go directly to the Hydrocephalus Association to cure hydrocephalus.” If patrons see the sign, they may be willing to dig a little deeper!
9. Birthday Gift Donation – It will be a lot easier for your friends and family to write you a birthday check instead of spending hours trying to shop for you! And then you can donate the amount to your WALK to End Hydrocephalus total.
10. Bowling Nights – Plan a fun night of bowling at your local lanes. Ask the owner to waive the cost of bowling so you can collect the “fee” for HA programs and research. When’s the last time you went bowling? It’s a great night – and how many other opportunities do you have to wear someone else’s shoes?
11. Bunko Night – At your company or corporation – or with friends
12. Business Cards – Print up some inexpensive business cards on your computer. Have all the pertinent information on the card including your name, the name of your WALK, your address and the URL and QR code for your WALK web page. Hand these out to everyone you meet!
13. Post it on a Bulletin – Place an advertisement in your church/synagogue bulletin/newsletter letting the congregation know what you’re up to. Or better yet, invite them to raise money and join you at the WALK!
14. Clubs and Organizations – Send a solicitation letter to your local Knights of Columbus, Lions Club, Rotary Club, Kiwanis, etc. They support individuals in their communities.
15. Company Grants – Find out if your company offers grants to employees who volunteer their time for charitable causes. If so, contact your local WALK Chair and ask how you can help plan and/or organize the event. Earn money for the cause for your volunteer service. You may need a letter from HA stating that you have volunteered – HA’s national office will be happy to handle that for you!
16. Cooking Lessons – Do you have a reputation as a gifted amateur chef? Give 5 friends a cooking lesson at $35 each – enjoy the outcome together with wine!
17. Corporate Matching Gifts – If your company doesn’t already have a matching gift program (check with your HR Department) ask your company to match the amount of donations you receive from your fellow coworkers. Email Matchinggifts@hydroassoc.org for more information or to report a match you have submitted.
    Check with everyone that donates – ask them if they work for a company that matches employee donations.
18. Dress Down Day – Ask your company or school to allow an official HA WALK Dress Down Day. For the privilege of dressing down, employees/students donate $5 or $10 toward your WALK total. Your company already dresses down? Try a “Hats On for Hydrocephalus” or something similar.
19. Garage Sale – Do you really need all that extra stuff taking up space in your garage, attic and/or basement? Gather it up and ask your friends to do the same. Then choose a day, put the stuff in the front yard and sell! All the money raised can go toward your fundraising goal!
20. Good Karma Tipping Jar – Ask local businesses to put a pledge jar near the register or on their front counter. Tape a picture of yourself to the jar (or your child if you have a child with hydrocephalus) and a short explanation of why you’re raising money.
21. Hair Salon – Ask your barber or hairdresser to donate $2 of every haircut they complete over the weekend.
22. Lemonade Stand – Ask your kids to set up a lemonade stand over the weekend with the proceeds going to your WALK to End Hydrocephalus total.
23. Meet the Press – Does your company distribute a newsletter? Does your company have interoffice email? Take advantage of these…it’s a perfect way to get the word out about hydrocephalus and the WALK!
24. Mow-a-Thon – Get your kids involved in this weekend activity. Check ahead of time with all your neighbors and ask them if they can mow their lawn for a cash donation ($25-50).
25. Neighbors – Write to all your neighbors on your block or in your building. Attach a letter stating what you’re doing and ask them to make a donation. Or just stick a flier in their mailboxes explaining why you’re raising money.
26. Neighborhood Chef – Are you a gifted amateur chef? Do people always rave about your duckling l’orange? Put a flyer in the neighbor’s mailboxes – you’ll prepare a gourmet dinner for 4 in exchange for a donation. Or tell neighbors you’ll sell them “uncooked apple pies” for their freezer (with cooking instructions).
27. Neighborhood Chores – Are you a Mr. or Ms. Fix-It? A lot of your neighbors would probably rather pay you than someone else. Place signs around your neighborhood or place in mailboxes advertising your services (i.e. watering gardens, cleaning roof gutters, fixing an easy plumbing problem, painting a room, hanging a flat screen TV, etc.)
28. Newspaper – Contact your local paper and get an article or a feature story – Make sure that you include information on how people can contribute. And have a photo ready to go!
29. Office Fundraising Challenge – Speak with everyone in your office and ask them to join a corporate WALK to End Hydrocephalus team. Put an article in the company newsletter. Challenge each other to raise the highest amount. Give the winner a prize like movie passes or a gift certificate to lunch or dinner.
30. Other Parents – If your kids play in the soccer leagues or on any other sports teams, distribute your donation forms to the other parents at the events.
31. Pet Birthday Party – People love their pets and they even love their friends’ pets. Organize a pet birthday party – ask guests to bring donations instead of toys or treats.
32. Pet Sit – Are your neighbors going away and they don’t want to leave their pet(s) at the kennel? Again, offer up your services and ask them to donate what they would have paid at the kennel to your WALK to End Hydrocephalus total.
33. Pizza Party – Ask your local pizzeria to donate pizzas and charge your coworkers $2 a slice.
34. Poker Game – Call your card-playing friends and invite them over for poker night!. Every other pot goes to HA or a percentage of every pot!
35. Raffle – Everyone that contributes to your WALK fundraiser is entered into a raffle to win a special item such as a donated gift card, homemade goodies or baseball tickets.
36. Return Address Labels – Print return address labels for your outgoing mail. Print something like, “Support my hydrocephalus fundraiser and donate” Add the URL or QR code to your WALK to End Hydrocephalus website.
37. Rock On! – If you know any musicians, ask them to perform a benefit concert. Tell people that their admission ticket is a check made out to the Hydrocephalus Association.
38. Email Signature/Message – Add a short sentence at the bottom of your e-mail signature saying that you’re walking in the WALK to End Hydrocephalus and ask for a donation. Include a link to your personal or team WALK website.
39. Television Show Premiere or Finale Party – It would be fun to gather a big group of friends together to tune in to watch the premiere of a new series or the big season or series finale. Of course, charge them at the door and put the money toward your WALK to End Hydrocephalus total.
40. Tell Your Story – The more you talk about your participation in the WALK to End Hydrocephalus, the more people will share in that excitement.
41. Theme Party/Dinner – Hold a theme party for 10 or more of your friends. Have each guest donate $50, spend no more than $20 per person on food and you’ll have $300 or more in contributions by the end of the night.
42. Wine and Cheese Party – Host a party at your home, collect donations after everyone has sampled the wine!

Download the Fundraising Ideas A-Z Toolsheet

1. Download the WALK to End Hydrocephalus Mobile App – The App is available in the Apple App store and Google Play store. Edit your page, update your supporters via text, whatsapp, and email. Templates are available or you can make your own custom message, thank you and team solicitation message.
2. Make a List – Of everyone you want to target including family, friends, co-workers, and acquaintances. Use this list to start asking for donations and support for your team. Hint: Go through your email contacts, your business card file, your address book (both electronic and the one you keep in the kitchen drawer), your club directory and don’t forget people you see every day.
3. Add the “Why” To Your Email Ask – Share your story. Edit one of HA’s email templates that are stored in your Participant Center. Add your reason for participating in the WALK to End Hydrocephalus and your personal story. Tell readers about the Hydrocephalus Association and its mission’s importance to you. If you have a loved one with hydrocephalus, tell people about it. (It not only answers the question “why” it also increases awareness about this little known condition!) Who was diagnosed? When? How did that impact the patient and the entire family? Add a photo that will bring life to the written story and make people want to read your email!
4. Start With Your Close Contacts – It’s always best to start with your close contacts because they’re most likely to donate. Try sending some quick email messages to your inner circle to jump start your fundraising. Once you have some momentum built up, use the email you personalized to reach out to other connections.
5. Start Your Facebook Fundraiser – From your WALK to End Hydrocephalus Mobile App or Participant Center, connect your fundraiser to Facebook with the click of a button. Next from your Facebook page,customize your message and photo and don’t forget to thank each donor as they contribute. Pro tip: change your message every so often to keep people engaged and repost (from Facebook).
6. Use Social Media – Now that you’ve gotten the ball rolling, it’s time to use social media. Use Instagram stories, Facebook stories and more to ask for donations and send people to your WALK page. Thank people publicly and share your progress. This lets people know that others are supporting you.
7. Re-Engage With Email – It never hurts to send follow-up emails or texts. Your first request may have been overlooked, or people intended to donate but forgot. With the number of emails people receive every day, they may have missed your first few requests. Or, people have opened your email and intend to give but forget to do so. Use email to update people on your fundraising progress as you achieve benchmarks – 25% of goal raised, 50% of goal raised, etc., and ask supporters to help you reach that next level.
8. Ask For a Specific Amount – Instead of saying “whatever you can give is appreciated” – although it is – ask for a donation of $25 or $35 or more. Many participants are successful by asking for a dollar for each hydrocephalus-related surgery or number of years since last revision.
9. Achieved your goal? – Increase it! If you’ve reached your initial goal of say, $300, increase it to $500. Keep the momentum going and surpass your team’s expectations!

Fundraising takes a little persistence, but we know you can do it! Your support is vitally important to the Hydrocephalus Association’s mission, and we THANK YOU in advance!

Download the Fundraising Tips Toolsheet

1. Write the Letter Your own letter comes from your heart. As one parent writes, “Someone’s going to ask you to donate to something. It might as well be me. I can think of NO BETTER CAUSE! Please, make the Hydrocephalus Association your cause to support.” Tell your family’s story how hydrocephalus has impacted not only the patient, but every member of the family. (Sample letters are below.)
2. Make Copies of Your Letter (If using Postal Service for delivery)
   • Sign each letter individually; perhaps with a personal closing.
   • Make sure to leave the signature block blank so you can personally sign each letter.
   • Enclose a copy of the Facts about Hydrocephalus document.
   • Enclose a self-addressed envelope for their reply (stamped, if possible).
3. Mail and/or e-mail the letter to:
   • Family and extended family
   • Friends and neighbors
   • Co-workers and acquaintances
   • Business associates and vendors
   • Clubs, organizations, teams and classes to which you or your family members belong.

   If you need help preparing your mailing, organize a letter addressing party. Pull the entire family together to sign, stuff, stamp and address your envelopes even the kids can help! You’ll be surprised what people will do for free food.

   Mail or email your letters, ideally eight weeks before the WALK to End Hydrocephalus. But if you’re running late don’t despair, there’s still time you have 4 weeks after the WALK to finish collecting money toward a recognition gift.

4. Collect Your Donations Nothing is quite as exciting as receiving your mail or checking your WALK webpage and seeing donations begin to arrive! You can expect to raise approximately $600 - $800 with a letter writing campaign. Some families have raised $20,000 or more!
5. Attend the WALK to End Hydrocephalus Have fun! Join your teammates and others who are walking to make a difference! Take a great thank you photo!
6. Thank You Notes Let each one of your donors know how much you appreciate their support. Use this occasion to announce how much your team raised. Consider printing your best team photo to say thank you and share the day with your donors.

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SAMPLE LETTER #1 (Returning Team)

The Rodger Family
Street Address City, State Zip Code

Dear Team Alex Members,

I have decided that since I am 12, and heading into 7th grade in a few weeks, maybe it should be my turn to write this year’s WALK letter!

I hope everyone is having fun this summer. My summer has been great; baseball camp, band camp, a trip to Atlanta with my Dad to see the Braves play (an incentive trip for getting all A’s on my report card!) and a relaxing trip to Sanibel. I am looking forward to starting my 2nd year in the Pre Med Academy at Boca Raton Middle School; continue to play the trumpet in Band, and moving to the next level of baseball in Boca Raton Little League.

The South Florida WALK to End Hydrocephalus is Saturday, November 9, 2013 at Quiet Waters Park in Deerfield Beach. Last year’s WALK was the biggest and best ever! My Mom and Dad (with our family and friends) worked really hard to raise a lot of money and with the help of all the other teams; we raised over $57,000 (That was $7,000 over our goal!)

In the next few months, I will work hard to raise hydrocephalus awareness. It is important that more people know about it for change to happen. My Mom says there are too many shunt surgeries happening and more research is needed. I have been really lucky that I haven’t needed surgery in four years; I hope I never have to have one ever again. (I have had 7 already!) The WALK is also important to me because it is a chance for people to come together as one. I want other families affected by this condition to know that they don’t have to be labeled by it. Anything is possible. We have 20 teams registered and almost $17,000 raised so far. I know we can reach our new goal!

Please help me support the Hydrocephalus Association and people like myself! You can:

1. Join us at the WALK on Saturday, November 9th at 9 am as a Family Team, a Corporate Team, an individual walker or a “virtual walker” Please remember to register on our website.
2. If you are unable to be at the WALK to End Hydrocephalus but would like to donate, you can simply use the enclosed envelope (please make all checks payable to the HYDROCEPHALUS ASSOCIATION with Team Alex in the memo) Our address is: insert your address.
3. You can donate directly to Team Alex on line on our website insert URL to WALK Team or Participant Page
4. You can encourage your company and/or local businesses to become corporate sponsors by donating either monetarily or in kind (food, water, prizes for our raffle.)
5. Learn more about Hydrocephalus (www.hydroassoc.org) and help spread the word!

If there are any questions, please feel free to contact my Mom, Eileen Rodger at insert Team Captain’s email address or at insert phone number. All donations are gratefully accepted and tax deductible. (Tax ID#: 94-3000301) Thank you and hope to see you there!

Alex (Michael and Eileen) Rodger

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SAMPLE LETTER #2

The Harris Family Street Address
City, State Zip Code

Dear Friends and Colleagues,

It’s hard to believe but it was more than 13 years ago when we sat with a pediatric neurosurgeon looking at CT scans of our newborn baby’s head, as he explained that he had a condition called hydrocephalus. At the time, I didn’t even know how to pronounce it, or that people even have ventricles (spaces filled with cerebral fluid) in their brains. We were told that his condition was “incompatible with long term survival” and that it would be fatal if we did not act quickly. The doctor told us that there is no cure but that he could possibly save our son’s life, his sight, his hearing and his mental abilities by operating to place a shunt into his brain. The shock of that moment with some hope that there is treatment caused us to look past an important point… ”there is no cure”.

As most of you know we have been blessed. The shunt has worked so well for Joey that we sometimes forget that it is just a temporary treatment and that there is no cure. In January of this year however, we were again reminded that there is no cure, when Joey’s shunt suddenly failed again. In an instant we were back to where we were 13 years ago… where we will probably be again at some time in the future.

While we continue to be grateful for the many doctors, nurses and bioengineers that have helped Joey, there still is no cure for hydrocephalus. The shunt is at best a temporary treatment for a life threatening condition that requires numerous unplanned brain surgeries to stay well. Joey has had 9 surgeries since his first. We also know that Joey is fortunate. So many others with hydrocephalus that we have come to know, have dealt with so much more than he has. With a little more research we may be able to change this. That is why this year we are walking again to raise money and awareness for the Hydrocephalus Association; especially for those who have it worse than Joey, because there is no cure… and there should be.

We are very excited that the WALK to End Hydrocephalus will be held at the Chicago lake front. Please come walk with us on September 14 at 9:30 AM on the lake front at Soldier’s Field in Chicago. To join or sponsor Team Harris, for the Chicago WALK to End Hydrocephalus, follow this link (insert link to WALK team’s web page) to visit our team web page. Some email systems do not support the use of links and therefore this link may not appear to work so you may copy and paste the following into your browser:

Joey Harris Personal WALK to End Hydrocephalus Page Link: insert entire URL for team’s web page.

If you’re receiving this letter in the mail you can type the address above into your web browser, too. Or, if you prefer you can send us a check made payable to the Hydrocephalus Association. Thank you for your support for Joey and all of those living with the challenges of hydrocephalus.

Tim, MaryBeth, Terry, Brian and Joey Harris

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SAMPLE LETTER #3

Jones Family Street Address
City, State Zip Code

Hello Family and Friends,

Do you know that more than 6,000 babies born this year will face a lifetime with the challenges of hydrocephalus? And that hydrocephalus is the number one reason for brain surgery among children? That anyone, at any time can be diagnosed with hydrocephalus? At this time there is no prevention and there is no cure.

When Amy was diagnosed with hydrocephalus — an abnormal accumulation of cerebral spinal fluid in the brain - at 2 days old, Janice and I were terrified! We had no idea what hydrocephalus was and what sort of future our daughter faced. The first 10 weeks of Amy’s life were “touch and go” with every day bringing a new challenge including multiple surgeries on our tiny, fragile baby. Although the doctors and nurses performed heroically during that time, we felt very alone. We never would have made it without the love and caring of family and friends like you …and the information and support we received from the Hydrocephalus Association (HA).

If you are unfamiliar with the organization, the stated mission of the Hydrocephalus Association is “find a cure for hydrocephalus and improve the lives of those impacted by the condition. ”Currently Amy is doing so well — to date she hasn’t shown any signs of developmental delay. And she hasn’t suffered any problems with her shunt this year — we had one serious scare a few months ago but, thankfully, it turned out to be a virus. (The symptoms of shunt malfunction mimic the flu or other diseases — while the flu isn’t great it’s infinitely preferable to a shunt infection or shunt malfunction!) Unfortunately, hydrocephalus is only controlled — not cured — and life-threatening complications can develop in a heartbeat, keeping us extremely watchful for the tiniest change in her behavior.

Janice, Amy and I will again be participating in the HA WALK on October 21 here in Raleigh, NC. Last year our team, Amy’s Army, raised over $1,270 thanks to your support! We were incredibly gratified by the generosity shown by our family and friends and very appreciative of your support. Thank you so much. Our goal for this year is $1,600 and we hope that you will, once again, support our team with a tax-deductible contribution. Donations of any size are gratefully received.

For obvious reasons we feel this is a very worthwhile cause. Your donation will support critical research and program services so that our daughter, and more than one million other Americans living with the challenges of this complicated and complex condition, can lead a better life.

You can track our progress — and donate — online at insert URL for team’s WALK web page. It’s quick and easy! Donations may also be directly mailed to us at insert address. Please send all donations by the end of October and make all checks payable to the Hydrocephalus Association.

Thank you for being a part of our lives! Your support and love makes the difference.

Much love and gratitude,

John, Janice and Amy
Amy’s Army

P.S. Please feel free to email or forward this message to anyone! The more people who know about hydrocephalus, the better!

Download the Letter Writing Campaign Toolsheet

Hydrocephalus

Hydrocephalus is a chronic condition caused by an abnormal accumulation of cerebrospinal fluid, resulting in pressure on
the brain

Hydrocephalus Is Common

Over one million Americans have hydrocephalus, in every stage of life, from infants to the elderly. Many US military personnel who suffered traumatic brain injury during service in Iraq and Afghanistan are developing hydrocephalus as a result.

1. Anyone, at any age, may be diagnosed with hydrocephalus.
2. Over 5,000 babies are born with hydrocephalus every year in the US alone.
3. Hydrocephalus is the most common reason for brain surgery in children.

There Is No Cure

Currently there is no prevention for hydrocephalus and there is no cure.
The most common treatment is brain surgery to implant a shunt but a shunt is not a cure! A shunt is only a control and
in children has a 50% failure rate in the first two years, requiring additional surgeries.
While many people are helped by surgery, many more need further operations to stay well. Over 36,000 hydrocephalus operations are performed annually in the U.S. (one every 15 minutes.). Having a shunt may result in a single patient enduring dozens of brain surgeries just to survive; a single patient undergoing 100+ is not rare.
The hospital charges for hydrocephalus are over $2 billion per year, yet the National Institutes of Health (NIH) invests less than $11 million per year in hydrocephalus treatment.

There Is a Crisis in Diagnosis

An estimated 800,000 older Americans have normal pressure hydrocephalus (NPH) as many as 640,000 of them are undiagnosed or may be misdiagnosed with Alzheimer’s, Parkinson’s disease, or dementia. Sadly, many are living in nursing homes unnecessarily -- when properly diagnosed and treated the patient often returns to normal functioning.
Hydrocephalus often is undiagnosed and untreated in younger adults, leading to substantial loss of productivity and increased healthcare costs.

More Effective Treatment Is Needed Now

Over the last 65 years, although technology has improved, there has been no significant change in hydrocephalus
treatment.
Research is essential. Since 2009 when the Hydrocephalus Association added “funding research” to its portfolio it has committed more than $13.8 million to research making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S.! But new revenue resources must be found to continue HA’s aggressive research program.

The Hydrocephalus Association (HA)

The Hydrocephalus Association was founded in 1983. It is the largest non-profit organization dedicated solely to hydrocephalus in the world. Its mission: to promote a cure for hydrocephalus and improve the lives of those impacted by the condition. You can help. Join the Hydrocephalus Association now in their fight against hydrocephalus!

Use our hydrocephalus facts and stats to educate your friends, family, and social followers. Together, we can build public awareness about this condition!

1. Hydrocephalus is a life-threatening condition that affects more than 1 million Americans.
2. Anyone, at any age, can develop hydrocephalus.
3. One out of every 770 babies will develop hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors.
4. There is no way to prevent hydrocephalus and there is no cure. The only known treatment requires brain surgery.
5. Hydrocephalus is the most common reason for brain surgery in children.
6. The most common surgical treatment for hydrocephalus is the surgical placement of a medical device called a shunt, which has one of the highest failure rates of any medical device on the market.
7. An estimated 50% of shunts in the pediatric population fail within two years of placement and repeated neurosurgical operations are often required.
8. There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.
9. Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common and 100 or more is not unheard of.
10. The core technology used to develop the shunt has not changed significantly since the 1950’s.
11. Over 36,000 shunt surgeries are performed each year (one every 15 minutes) and more than half of them represent emergencies.
12. Pediatric hydrocephalus alone accounts for more than 40,000 hospital admissions each year (400,000 hospital days.)
13. The hospital charges for hydrocephalus are over $2 billion per year.
14. Up to half (50%) of infants diagnosed with hydrocephalus will have a learning disability.
15. Since 2000, more than 370,000 U.S. service members have sustained a traumatic brain injury (TBI), one cause of hydrocephalus. It is estimated that 14% of those who suffered a severe TBI could develop hydrocephalus.
16. An estimated 800,000 older Americans are believed to have normal pressure hydrocephalus (NPH), but often are misdiagnosed as Alzheimer’s, Parkinson’s, or dementia. When correctly diagnosed and treated, the patient often can return to full functioning!
17. Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184M over five years.
18. The Hydrocephalus Association provides free support and education to individuals, families, and medical professionals dealing with the complex issues of this condition.
19. Since 2009, HA has invested over $13.8 million in research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. Our grantees have gone on to secure over $73 million in additional funding to continue their research.
20. Thanks to HA’s Research Initiative, there are 12 drugs currently being tested that could have a major impact on people living with hydrocephalus.