…My son was born in 1989 with among other disabilities physical and intellectual, the Condition known as Hydrochepalus. This condition has a long and confluted history originally the people with it were treated as freaks, many ended up in circuses. life was terrible until society started to treat the condition rather than shunning the sufferrer. Thankfully through advances in treatment my son and many others today, can lead normal lives without anyone knowing there is anything wrong.
Please support this amazing organization in the great work they do moving forward.
for more information here is the link to their website. http://www.hydroassoc.org/ha-updates/september-is-hydrocephalus-awareness-month-heres-what-you-can-do/#more-7507
The story below was Reposted from a story Posted by amandagarzon on August 30, 2012 · by Jennifer Bechard, Support Group Liaison
This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or 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 and in 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!
Our TOP 20 Ways to Make an Impact
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. To make a contribution, click here.
- Remember HA in your will and join the Legacy Society, our planned giving program. To learn more, click here.
- 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 email@example.com to find out how.
- Are you between the ages of 12 to 25? Join our Teens Take Charge (TTC) program. Click here.
- Make a difference one step at a time with the Hydrocephalus Association by joining a WALK in your area.To see the schedule, click here. If there is not a WALK nearby, join HA’s virtual WALK.
- Participate in a marathon or another extreme sport for HA. Visit http://run4hydro.kintera.org/athletes 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 firstname.lastname@example.org 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 email@example.com and we can help you put your journey into words.
The fight does not stop here nor does it stop today! Join us on Facebook and tell us other things you have done this month to raise awareness of hydrocephalus.
Two weeks ago I stripped the thread on the bearings in my front casters of my custom wheelchair, and because of advice from professional wheelchair athletes and one wheelchair dancer, I contacted sport aid.
Sport aid is a wheelchair supply company with a great reputation, Jimbo from the company went the extra mile with Ella because my chair was built in Australia so all the measurements were metric. He converted them then found the right replacements and they were sent via UPS. We got a tracking number and were told to expect them in 48 hours, well nothing showed and Friday this week just yesterday we checked the tracking number only to find out some lying putz had reported they had been delivered to me.
I rang UPS and the first phone operator was rude dismissive and sarcastic and made comments to the effect that” just cos you in a chair you think you’re special!”
I demanded to speak to her supervisor, of course she lied and instead of as she said she had explained everything to her supervisor and they would help I simply got put back on call wait and started all over again. So after she acted like it was no big deal I was passed on to her supervisor in the state of Virginia, who after much groveling passed me onto the state supervisor in NEW York a little closer to home.
The state director couldn’t suck up enough even though at first they declined to rush the new wheels (yes the amazing sport aid had stepped up and sent replacements free of charge), then the state manager guaranteed as a mea culpa over night rush delivery and they would eat the cost.
So this morning we checked tracking at 10 am, the wheels were on a truck in flushing and would be here guaranteed at 12 midday on the dot? 12.25 No wheels.
I started writing this before I rang them again, because at 12.25 the tracking said “unable to deliver client not home next deliver date the 4th of September”.
Were not home? Without wheels where did they think I was tap dance class?
So we rang the operator, She it turned out was in Nicaragua she was dutifully mortified so Nicaragua rang Virginia, Virginia rang New York and New York rang Maspeth queens and they say that they have intercepted the van mid route and the manager is personally delivering by 2pm 1 hour after my call.
Well folks it’s 1.14 who wants money on another screw up? I was meant to have the wheels by Wednesday be in a half marathon at 7am this morning then be at Brooklyn for a street fair through my climbing gym Brooklyn boulders. All this achieved after having taken my chair to SIDS BIKES Manhattan store to have the casters put on.
So thank you UPS, It’s hard enough getting around and keeping a schedule in NY when your chair works but when the brown screws the pooch with a simple delivery not once but twice it’s impossible .Stay tuned folks let’s see what happens at 2pm
foot note- 1.29pm still no wheels