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Molli Redmon

County organization hosts fundraiser for family

WJHG | Original Link by Brian Hill Jackson County, Florida, United States —A Jackson County service club is teaming up with some local businesses to help a child with health issues. The Optimist Club has organized a fundraiser for Molli Redmon who suffers from Spina Bifida. Like most girls her age, 11-year old Molli Redmon […]

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Amar's family believes his tails is proof of a connection with the Hindu monkey-god Hanuman.

Boy, six, worshipped in his village as a monkey-like god because he has a foot-long TAIL (… and his family don’t want to get it cut)

Daily Mail | Original Link by Sara Malm Nijmapur, India —A six-year-old boy has found himself worshipped in his tiny Indian village after growing a foot-long tail. Amar Singh has a patch of thick hair on the small of his back, which has grown to more than 12 inches in length to resemble a ‘tail’. […]

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Voluntary training with spinal stimulation. Video courtesy of the University of Louisville.

Paralyzed Men Regain Movement With Spinal Stimulation

NIH Research Matters | Original Link Four young men paralyzed below the chest because of spinal cord injuries were able to regain control of some movement after receiving an experimental spinal stimulation therapy. If confirmed in larger studies, this type of treatment may one day improve outcomes for people living with paralysis. In an earlier […]

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Miracle League

Opening day for baseball for those with disabilities

KRIS-TV | Original Link by Ila Mar Corpus Christi, Texas, United States —It was a windy day for baseball, but that didn’t stop dozens of people with mental and physical disabilities from playing in the Miracle League’s opening day for baseball. Families, friends, and many volunteers gathered at the Citgo Miracle League field to help […]

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IF SBH

Spina Bifida and Hydrocephalus Partner Engagement Meeting

Beautiful Kamukama from Western Uganda, a thriving 13 year old with Spina Bifida, is one of the first children operated on by Dr Warf back in 200111 April 2014 // Key actors on spina bifida and hydrocephalus global arena assembled today in Boston, Massachusetts at the unprecedented event- Partner Engagement Meeting. IF is represented by its President Margo Whiteford and Secretary General Lieven Bauwens.

The main aim of this gathering is to engage in a forum to explore a strategic partnership and identify potential opportunities and synergies to strengthen global efforts for the prevention of spina bifida and hydrocephalus and care of people living with these conditions.

Discussions will tackle existing challenges and provide a forum for partner groups to share information on each organization’s priorities and current efforts. The potential for partner network collaboration and public health impact across our organizations will be optimized and synergistic opportunities will be identified.

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IW ASBAH logo

NHS (UK) grant for support group

Isle of Wight | Original Link Isle of Wight, United Kingdom —An organisation that helps people with Spina Bifida and Hydrocephalus on the Isle of Wight has been awarded a £2,500 grant to raise awareness of the support it can offer to families. The Isle of Wight Association for Spina Bifida and Hydrocephalus (IW ASBAH) […]

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Mohamed Alaryani, 12, with his father, Saif, and brother at the Sheikh Zayed Campus for Advanced Children’s Medicine at Children’s National Medical Center in Washington, D.C. Photo by  Evelyn Hockstein for The National.

How Zayed’s legacy gives new hope to sick children

The National UAE | Original Link by Taimur Khan Washington, DC, United States —When Mohamed Al Aryani moved from Al Ain to Washington last year, the 12-year-old football fanatic had never walked without crutches, let alone played sports with cousins and friends. Mohamed and his parents had travelled to the US capital for years for […]

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IF SBH

FORTIMAS: An Approach for Tracking the Population Coverage and Impact of a Flour Fortification Program

A new guide for guide for Fortification Monitoring and Surveillance is available!9 April 2014 // Smarter Futures, a partnership that brings together the Ministry of Foreign Affairs of the Netherlands, AkzoNobel, Flour Fortification Initiative (FFI), Helen Keller International (HKI) and the International Federation for Spina Bifida and Hydrocephalus (IF), has recently published a guide for Fortification Monitoring and Surveillance called FORTIMAS. It can be downloaded here. The primary aim of the guide is to propose a population-level data collection approach to help answer the question, “is the micronutrient status of those who regularly consume sufficient quality fortified flour improving?”.

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IF SBH

The importance of participatory citizenship in Europe

article 11 of the Treaty on the Functioning of the EU underlines the need for “institutions to maintain an open, transparent and regular dialogue with representative associations and civil society”3 April 2014 // Representatives of the European Year of Citizens Alliance (EYCA) of which IF is a member, met with the President of the European Parliament, Martin Schulz.

The aim of this meeting was to discuss citizenship participation as a vital aspect for Europe’s future. For people with spina bifida and hydrocephalus discrepancies in the accessibility of healthcare services still remain main barriers in executing a fully active and participatory citizenship.

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Griffin Russell (left), has been helping his sister Faith train for her next 5K race, the Spring Brook Sprint. Faith Has Spina Bifida and she hasn't let it slow her down, she ran her first 5K in March and will run another on April 12.

Spina bifida can’t stop 8-year-old Faith Russell

The Daily Times | Original Link by Linda Braden Albert Knoxville, Tennessee, United States —Faith Russell may only be 8 years old, but the impact she is having on the world around her exemplifies the Bible verse … “And a little child shall lead them.” Faith, wearing a pink T-shirt with the words, “I’m Faith,” […]

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WEST College Scotland students in Greenock raised valuable funds for the Scottish Spina Bifida Association.

Fundraiser is a piece of cake for Greenock students

WEST College Scotland students in Greenock raised valuable funds for the Scottish Spina Bifida Association. Greenock Telegraph | Original Link Greenock, Scotland, United Kingdom —West College Scotland students in Greenock raised valuable funds for the Scottish Spina Bifida Association. Six members of the students’ association teamed up to help raise £310. They decided to support […]

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