Neurofibromatosis Fundraising and Awareness Campaign

  1. Reggie Bibbs - What is Neurofibromatosis?

    # vimeo.com/943579 Uploaded 194 Plays 0 Comments
  2. Series investigating the extremes of discrimination. Each episode brings together two people often defined by the way they look - one has a facial disfigurement, the other an intense preoccupation with their appearance.

    Twenty-one-year-old beautyholic and drama student Gary Thompson meets 47-year-old Reggie Bibbs from Houston, Texas.

    Gary has spent up to £31,000 in the last five years on looking good. He wants to have a nose job and look like Kim Kardashian.

    Reggie has one the world's most extreme cases of neurofibromatosis, a condition where tumours grow all over the body.

    Gary learns about Reggie's past and how he spent 30 years hiding from other people.

    Reggie sends Gary to watch a rhinoplasty operation and he sees a surgeon breaking a patient's nose. He also meets Tammy, a former rhinoplasty patient whose operation went wrong and who now has no sense of smell as a result. Will Reggie persuade Gary not to have a nose job?

    Featuring: Reggie Bibbs and Gary Thompson

    This video was produced by Betty TV in London, England for Channel 4 featuring Reggie Bibbs, founder and Director of the Just Ask Foundation, a 501(c)(3) not for profit organization. By posting this video on VIMEO, Reggie Bibbs, the Just Ask Foundation and its Directors are not receiving payment or any monetary or financial gain by airing this video. Copyright remains with Betty Productiona and Channel 4 TV in London, England.

    # vimeo.com/46248151 Uploaded 2,250 Plays 3 Comments
  3. I wanted to make a video that somehow conveys the sentiment that Reggie makes the world a brighter place... that his friends enrich his life just like he enriches ours. But I didn't want it to be maudlin or sappy... I wanted it to be lighthearted and whimsical. Reggie, above all else, loves making people happy. This video has the same simple agenda.

    Thanks to all the people who participated in this. This footage is part of a long-term "art project" I'm working on.

    The song I'm using is "Cats and Dogs in Idaho," by Leann Grimes (thanks!).

    # vimeo.com/56308669 Uploaded 380 Plays 6 Comments
  4. Reggie Bibbs recently spoke to an NF group in Canada, Alberta to be more exact. He was so moved and excited about his experience that he wanted to tell all his friends on Facebook, the blog and his website. So he made a video! And this is what he had to say...

    # vimeo.com/22950380 Uploaded 253 Plays 0 Comments
  5. We recently had the pleasure of working with MBNF on a new video project, aimed at raising awarness for Neurofibromatosis – a genetic disorder that affects 1 in 3000 people.

    It was a really great project to be involved in – great people working for a great cause.

    Check out their website at http://mbnf.ca to learn more.

    # vimeo.com/43497116 Uploaded 160 Plays 0 Comments

Neurofibromatosis Fundraising and Awareness Campaign

Adriaan Bakker

Pronounced neuro-fibroma-tosis and commonly referred to as NF.

Neurofibromatosis (NF) is an umbrella name for 3 distinct complex genetic disorders that share a common manifestation: tumour growth in the tissues that surround nerves. Most of these tumours…


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Pronounced neuro-fibroma-tosis and commonly referred to as NF.

Neurofibromatosis (NF) is an umbrella name for 3 distinct complex genetic disorders that share a common manifestation: tumour growth in the tissues that surround nerves. Most of these tumours are benign, although occasionally they can become malignant. NF may also cause additional complications such as disfigurement, bone deformities and learning disabilities. Neurofibromatosis equally affects males and females of all ethnic groups. Although more common than cystic fibrosis, Duchenne muscular dystrophy, Huntington’s disease and Tay-Sachs disease combined, neurofibromatosis is largely unknown and misunderstood in the general population. The 3 types of neurofibromatosis are:

Neurofibromatosis Type 1 (NF1): the most common form affecting approximately 1 in 3,000 to 4,000 births.
Neurofibromatosis Type 2 (NF2): the less common form, affecting approximately 1 in 40,000 births.
Schwannomatosis appears to occur as often as NF2.

NF1 is the most common form of neurofibromatosis, causing developmental changes in the nervous system, skin, bones, and other tissues. NF1 is commonly characterized by the presence of café-au-lait spots, auxiliary freckling, cutaneous neurofibromas (tumours) and Lische nodules (freckles on the iris of the eye). Half of the cases of NF1 result from spontaneous genetic alteration, while the remainder of the cases are inherited from one or both of the parents.

NF1 affects each person differently. Some people are quite severely affected and require increased medical treatment while others are quite mildly affected and may not experience any impacting symptoms of the disorder. Each individual with NF1 – even those in the same family – can be affected to a very different extent. Overall, it is estimated that about half of the people with NF1 are mildly affected by the disorder. While it is very unlikely that any one person diagnosed with NF will experience all of the associated complications, it is difficult to predict the severity or progression of the disorder in any individual case.

NF2, also called Bilateral Acoustic Neurofibromatosis, is very different from NF1 and a much rarer disorder characterized by the growth of vestibular schwannomas, tumours affecting the auditory nerves and sometimes associated with tumours of the central nervous system. NF2 affects approximately 1 in 40,000 people.
Schwannomatosis is the most recently recognized form of neurofibromatosis, characterized by the growth of multiple schwannomas anywhere except on the vestibular nerve. This disorder appears to occur as often as NF2.

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