Currently: An update - National Spina Bifida Registry John Wiener MD, Pediatric Urologist Duke Health Robin Bowman MD, Neurosurgeon, Multidisciplinary SB Center Anne & Robert Lurie, Children's Hospital of Chicago #TealOnTheHill #spinabifida #disability #advocacy

Currently discussing the importance of the National Spina Bifida Registry as it promotes consistent and standardized care and outcomes across centers and increase understanding and efficacy of health decisions. #TealOnTheHill #spinabifida #disability #advocacy

Goal: To increase the number of individuals nationwide on the Spina Bifida Registry to further increase understanding of best practices in medical care.Accomplishing this requires increased funding for National SB Program CDC #TealOnTheHill #spinabifida #disability #advocacy

Nora Henle, Spina Bifida Assn Director of Marketing and Communications, is leading a session on "Finding Your Story," and how to communicate that story to legislators and policymakers. #TealOnTheHill #spinabifida #disability #advocacy

How to be effective when advocating to your representative: ***Share your personal story Contact them through multiple avenues, including: >phone call >tweet >video >email #TealOnTheHill #spinabifida #disability #advocacy

What a great day!! Thank you to Spina Bifida Assn for hosting such a great event! #TealOnTheHill #spinabifida #disability #advocacy

The Abilities Expo is going virtual this weekend, June 19-21! Their event lineup will be available 24-hours a day (great for any time zone) starting June 19 at 8 AM Eastern Time. The event is free, but be sure to register to receive the login details. bit.ly/2ABTWKk

We're updating our contact list! Please send updated contact information for your family (and/or for your kiddos with #SpinaBifida) to [email protected].

It’s lunch time with Malachi and his dad, Jason. “Malachi is 100% tube fed. He eats a customized, whole food blend and gets a lot of water to make sure he stays hydrated.” Donate today for #GivingTuesday and help change the odds for kids like Malachi: bit.ly/36jrBpk

“We don’t expect Malachi will ever walk, but the stander used by his physical therapy team helps get positive pressure into his legs and joints,” said Whitney. Your support for #GivingTuesday provides specialty care that helps kids like Malachi thrive: bit.ly/36jrBpk

A quick outfit change and Malachi is ready for playtime with his nurse, Heaven. Kids need more than expert care. They also deserve the chance to be a kid, no matter their circumstances. Donate today for #GivingTuesday and support kids like Malachi. bit.ly/36jrBpk

One of our kiddos was followed along today by Seattle Children's! #spinabifida #disability #medical

Check out the video in this article! Seattle Children's joined with WM on a special surprise for garbage truck, super-fan Malachi at his home in City of Lynnwood. #seattlekids #pnwkids #spinabifida

This is good information

Looking for a COVID-19 vaccine appointment tonight? We have a few hundred doses of the COVID-19 vaccine that need to be administered tonight. All those 16 years and older are eligible. Appointments are required. Schedule now at the link below. bit.ly/2R4VqEK

The Arc of Snohomish County shared this presentation: "Disability History, Activism & Pride" Recorded presentation: arcsno.org/about-us/the-a… #disabilityhistory #disability #ushistory

*12 Days of Able Q&A: Are gift-givers charged a fee when they contribute?* There is no fee if you contribute to a gifting page through a bank account (ACH) or by mailing in a check. If you contribute using a debit card, fees are 2.9% of the contribution +$0.30.

What to include in winter emergency car kit — Medical Family edition arcsno.org/about-us/the-a… #disability #winter #snow

Today is #WorldSpinaBifidaDay! Like every other day in the US, approximately 5 babies will be born with #SpinaBifida.* These new members of our community - and the estimated 166,000+ people living with Spina Bifida in this country - deserve to have a better and brighter future.

The International Federation for Spina Bifida and Hydrocephalus established this day during their General Assembly in Guatemala in 2011. The first World Spina Bifida and Hydocephalus Day was held 10 years ago in 2012!