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Adult Hydrocephalus Clinical Research Network October 23, 2014

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Adult Hydrocephalus Clinical Research Network (AHCRN) is a collaboration of physicians to improve treatments and outcomes for adults with hydrocephalus. It is comprised of a group of neurosurgeons, neurologists, a neuropsychologist, philanthropists, businesses, and nonprofit experts who have joined forces to share data and to partner on investigations into improved treatment for the adult forms of hydrocephalus, including transitional patients who were diagnosed as children, those who acquire hydrocephalus as adults, and patients with normal pressure hydrocephalus. The Hydrocephalus Association (HA) has been instrumental in providing the startup funding and infrastructure support for the network.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

2014 Hydrocephalus Association Walk – Another Huge Success! October 17, 2014

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What a great day we had for this event! We were joined by Barrow doctors and nurses including our NPH specialists Drs. Jiong Shi and Joseph Zabramski, as well as pediatric specialist Katie Klas, PNP, from Barrow Neurological Institute at Phoenix Children’s Hospital. A special thanks to the Phoenix Fire Department and Ronald McDonald for coming out.

PVHS Cheer Squad Cindy McElfresh, Edie Simpson, RN, Peg McCaluley, Storm Hill Maggie Bobrowitz, RN,  Katie Klas, PNP, Drs. Jiong Shi & Joseph Zabramski

More photos can be found on the HA Facebook page.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

HA Walk this Saturday **Details Below** October 1, 2014

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ATTENTION ALL TEAM CAPTAINS AND WALKERS!

2014 PHOENIX HA WALK TIPS!

Team Captains – Please share this information with your team! 

 

  • The 2014 Hydrocephalus Association WALK is Saturday, OCTOBER 4th!
  • Rain or Shine, we will WALK!
  • The 2014 HA WALK will be held at Steele Indian School Park (Circle of Life area) at 300 East Indian School Road, Phoenix, Arizona 85012. You can enter the park on either Indian School Road or Central Avenue. There are parking lots and access to the Circle of Life area at either entry. We encourage all participants to take the light rail and get off on the Steele Park route stop (www.valleymetro.org/metrolightrail).
  • Walker Registration/Check-In opens at 8:30 AM. All walkers are asked to check-in at Walker Registration/Check-In, especially if you have money to turn in or if you have raised $50 or more so you can obtain your T-shirt ticket.
  • The route distance is 5-K or 3.1 miles (or whatever the distance for your site is) which should take approximately 1 hour & 20 minutes. The WALK will kick-off at 10:00 AM!
  • Participants are welcome to run the route if they choose. However, please know this is NOT a sanctioned, or timed event.

Other activities at the WALK include:

  • The exclusive VIP tent for the top fundraising team
  • T-shirt design contest (begins at 9 AM)
  • A visit by Ronald McDonald
  • Music by name of DJ AVL (do I hear the “Cha-Cha Hustle” or the “Electric Slide?”)
  • Our traditional raffle with dozens of prizes will be held again this year! (Can you say gift cards galore?!)
  • A bake sale with baked goods will be available for purchase, including a cake WALK!
  • Face painting
  • Teams entering the T-Shirt Design contest should plan to arrive on site no later than 8:50 AM. If you are planning on entering the Team T-shirt Design Contest please sign up at the DJ’s booth. Listen for the DJ to issue a “Call to the Stage” as the team T-shirt Design Contest will begin promptly at 9 AM. When the call is made for the T-Shirt Design contest please make your way over to the stage with your team representative ready to “model” your T-shirt!!
  • A group photo will be taken at 9:45 AM.
  • The WALK route is accessible to strollers, wagons, and wheelchairs. SAFETY IS OUR FIRST AND FOREMOST CONCERN OF THE DAY!Please wear the appropriate protective gear. NO BICYCLES, SCOOTERS or RAZORS, PLEASE!

 *To print your Online Donations Report:

  • Access your HA WALK web page
  • Log-In
  • Go to “My HQ
  • Click on the “Reports” tab at the top of the page (Your donations list should show up at the bottom of the screen)
  • Just above the list of donations, on the right side, is a “Printable” option; click “Printable”
  • Print as you would any other document.

If you have difficulty printing your online donations report please contact the HA office at (888) 598-3789 Ext. 12.

 HAVE FUN!

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

NPH Education Continues at Barrow Neurological Institute September 26, 2014

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The Normal Pressure Hydrocephalus (NPH) Center at Barrow Neurological Institute offers continuing education conferences for our residents to expand knowledge about NPH and other cognitive and movement disorders.

The neurology residents attended an overview of NPH presented this month by Dr. Jiong Shi. Dr. Shi is the Medical Director of the Barrow NPH Center and highly respected for his work in this field. Keep in mind this was intended for an audience of medical professionals, so if you don’t understand some of the language used in the talk you can post your questions here.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

Hydrocephalus Association Walk October 4, 2014 ** Details** August 30, 2014

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Hello everyone,

Our 2014 walk is approaching quickly and we are looking for more volunteers.

Click here to view Pre-Event Day Volunteer Opportunities.

Click here to view opportunities for sponsors.

No task is too small to make a difference.

 Please see message from lead event facilitator below.

 We are only a few days away from HYDROCEPHALUS AWARENESS MONTH!!!!

  1.  We are looking specifically for Mesa, Gilbert, Chandler, Scottsdale and/or Tempe residents to share their hydrocephalus stories and be featured in local media! Email Mindy at mindywein@cox.netto be highlighted! 
  2. Raise money for you and your team with a percentage day fundraiser! All you have to do is just tell us the day and restaurant (Applebees, Manuel’s, California Pizza Kitchen, Oregano’s, Rubio’s, Chipotle, Pei Wei, Chompie’s, etc- your choice!) where you want to host your event. We’ll do ALL of the organizing/ planning!Just show up and dine with ALL ofyour family and friends and the amount raised will be credited towards you and your team!!!! The more patrons you bring to your percentage night, the more money you will raise! Can you say VIP access and more incentive prizes?! Let’s see which team can raise the most money and awareness in September!!!!!
  3.  September is a great time to remind your family and friends about your personal reason to walk. It’s not too late to use an email/letter writing campaign to inform your family and friends that you are supporting the cause! Please let us know if you are interested in doing so and we will provide you with all of the support and resources you need to make this a success for you and/or your team! We encourage all teams to try a letter writing campaign in addition to posting their personal page links on social media.
  4. We are taking song requests for DJ AVL! Please send us your favorite songs you would like to hear while you are walking/socializing so we can be sure to have them available to play at the WALK. Please remember family friendly songs only. 

 Finally, THANK YOU ALL for your continued efforts and support! We truly appreciate YOU!!

Courtney Hemphill and Steph Royden
2014 Arizona Hydrocephalus Association WALK Chairs
phoenixhawalk@gmail.com
Hawalk.kintera.org/Phoenix

Facebook page: 2014 Phoenix Hydrocephalus Association WALK

Twitter: @Phoenixhawalk

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

Learn Fast Facts about NPH! August 29, 2014

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View our NPH fact sheet.

 

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center 

 

A Sad Farewell to a Rock Legend and HA Advocate: Dick Wagner August 14, 2014

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The specialists at the Barrow Normal Pressure Hydrocephalus Center are deeply saddened about the death of our friend Dick Wagner. A world-famous rock n’ roller, composer, and author, Dick touched us on such a personal level.

After years of struggling with various symptoms associated with NPH, he was successfully treated at Barrow Neurological Institute by Joseph Zabramski, MD. Since that time he has relentlessly engaged in opportunities to raise awareness of this condition until he succumbed to health problems unrelated to NPH.

We would like to extend our deepest sympathy and prayers to his family and all of his many friends.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center

Protect Yourself from West Nile Virus July 30, 2014

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Maricopa County Department of Public Health recently announced the county’s first death of the season from West Nile Virus. The victim was an East Valley man with underlying health issues. West Nile Virus is spread through the bite of an infected mosquito.

Simple precautions to avoid mosquitos and the diseases they carry include:

  • Avoid outside activity between dusk and dawn, when mosquitoes are most active.
  • If you must be outdoors during this time, wear lightweight clothing that covers your arms and legs and use an insect repellent (follow the directions).
  • Make sure doors and windows have tight-fitting screens and remain closed.
  • Eliminate mosquito-breeding sites around the home by removing standing water in potted plants, containers, etc. Change the water in outdoor flowerpots, birdbaths, and pet bowls at least twice a week.
  • Properly maintain swimming pools and decorative water features.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center

One Man’s Journey to Find Treatment for NPH July 18, 2014

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Read about Ed Stall’s journey to find relief from his symptoms related to Normal Pressure Hydrocephalus (NPH).

Mr. Stall underwent surgical placement of a shunt device by Joseph Zabramski, MD, surgical director of the Barrow NPH Center. Read about Ed’s NPH treatment here.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow NPH Center
margaret.bobrowitz@dignityhealth.org

Save the Date for the Next Hydrocephalus Association Walk June 26, 2014

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This year’s Annual Hydrocephalus Association Walk is being held on October 4, 2014 at Steel Indian School Park from 8:00am-12:00pm.

If you would like to volunteer in any way please contact me through this blog. No task is too small to be of great assistance!

Details about registration and the event itself can be found on the Hydrocephalus Association’s website.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Normal Pressure Hydrocephalus Center  

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