HA to Meet With Key National Representatives

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By Rick Smith, HA Acting CEO

capitol building in washington dcAs we enter September, which has been designated as National Hydrocephalus Awareness Month, HA is working with the Pediatric Hydrocephalus Foundation and other organizations on the planning and organizing of A Day of Testimony on Capitol Hill. The Day of Testimony will take place on September 23rd, and our goal will be to educate national legislators on the need to devote more resources to hydrocephalus research. Our delegation will be led by Board Chairman, Paul Gross, with other HA speakers including Jenn Bechard (HA Staff), and Michael Williams, MD (HA Medical Advisory Board). In addition, our D.C. delegation has arranged several meetings with key legislators where we will enlist their support on a longer term agenda to secure more resources for hydrocephalus research. We hope to have several important, related, announcements soon, so stay tuned.

9 Comments for : HA to Meet With Key National Representatives
    • Judy Sundal
    • October 24, 2011
    Reply

    My 38 year old son suffers from low pressure hydrocephalus, from a head injury he sustained at the age of 11. The past 1.75 years he’s been in ICU and the last 8 months SNF. Although he’s dealt with this condition for 25 years with much success, these most recent events have left him totally dependent on others for his daily needs. If any one has advice for rehab and second opinoins please respond. We are near Buffalo, NY

  1. Reply

    Our mom had been diagnosed with hydrocephalus at age 62. It took roughly 2 years to have her first shunt placed at Harbor UCLA county hospital who have excellent neurosurgeons and neurologists that knew about hydrocephalus (water in the brain). However, I cannot say the same for other hospitals that my mom has been in since her first shunt replacement. We were even told by a neurologist that my mom has Alzheimer’s disease and then Parkinson’s disease even AFTER she had her second shunt replacement. Needless to say, time is wasted on waiting for the world to catch up on “what” is hydrocephalus” and more time should be spent on “why” people are having Hydrocephelus and “how” can we cure this often times misdiagnosed condition.

    • Regina Tegeler
    • September 16, 2011
    Reply

    Thank for bringing the need for research to our legislators. With funding for more research and the resulting improvements, many people who are affected by hydrocephalus can be helped.

    • Vicki
    • September 16, 2011
    Reply

    My son was diagnosed with congenital hydro at 14 months back in 2001. His shunt recently broke, he did not become ill before surgery. His neurosurgeon ended up removing his shunt altogether, it seems he does not have Hydrocephalus anymore. He is now 11 yrs old, follow up MRI 6 weeks after surgery, showed normal ventricules!! There is hope. Neurosurgeon has no explanation for this and has never had the opportunity to remove a permanent shunt.

    • Kimberly
    • September 11, 2011
    Reply

    Good! Thank you!

    Having a 12 year old daughter who has already undergone 32 brain surgeries – – – we need more resources, research and improvements on Hydrocephalus.

    I am hearing more people who are misdiagnosed with Alzheimers instead of NPH.

    Good luck on 9/23!

    • Karen Buck
    • September 7, 2011
    Reply

    I am on of the fortunate one and yet my diagnosis took over 1 year which I spent primarily with rheumatologists until they ran out of options and passed me on to Neurology. Just to complicate things I had Polymyalgia Rheumatica hit at the same time. I had my nph shunt surgery done at Johns Hopkins and had instant improvements. I no longer lose my balance and fall and the tremor is nearly gone. I am working to regain the cognitive abilities. Since I’m in the DC Metro area I am available to help out if you ever need any.

    • Heidi
    • September 3, 2011
    Reply

    Finally, more awareness! I am trilled that this is being brought to the legislators. I can’t wait to hear more!!! THANK YOU. I will defintely spread the word about Sept 23!!

    • Keren Peters Atkinson
    • September 3, 2011
    Reply

    I applaud HA’s efforts to advocate for additional government funding for hydrocephalus research!

    Would a letter-writing campaign to those legislators (with whom the delegation is meeting) by children and adults with hydrocephalus, and their parents/families, give added weight and urgency to need for additional funding? There is power in numbers and no one can speak about the challenges of living with hydrocephalus better than those who do.

    If you posted the names of the legislators and their mail or email addresses, “we” could be part of that Day of Testimony.

  2. Reply

    Thank goodness! My husband was belatedly diagnosed with NPH but died August 6th. Thank goodness I found a neurologist and neurosurgeon who were excellently educated in this disease but unfortunately the damage was done. Prior to finding these two exeptional doctors I had gone through more than a handful of neurologists and radiologists who either did not know what to do with the disease or just didn’t feel it was unusual to have enlarged ventricules. Instead they diagnosed my husband, K.B. with end stage Alzheimers, which I strongly protested because he had never shown signs of Alzheimers. Nevertheless K.B. suffered the indignation and trauma of the disease. The rehab centers and nursing facilities did not know how to help him and many of the doctors actually had to have NPH explained to them. The end was not good. I pray no one should ever have to suffer with this again and that their loved ones would not feel so alone and frustrated. My husband died needlessly. Your website has done a great deal in educating me – it would be good if our neurologists and radiologists were educated as well. K.B. and I would have been married 29 years just a few days ago. Thank you for your dedication and crusade in bringing this to the public’s attention. It is needless and plain wrong for people to die with NPH. From my broken heart thank you for the lives you have saved.

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