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World NF Awareness Day & Month

World NF Awareness Day & Month – This is an awareness day that hits very close to home as I have Neurofibromatosis (NF). My mother, an uncle and cousins have NF. Some cities are gonna Shine A Light on NF 2018.



World NF Awareness Day & Month

NF stands for Neurofibromatosis. NF runs in my family including myself, my mom, uncle and cousins on my mom’s side. This day is celebrated each year on May 17. Each May is known as NF Awareness Month (Neurofibromatosis Awareness Month) by The Children’s Tumor Foundation. One purpose of this awareness day is that many medics, politicians, and other healthcare professionals have never heard of the condition.

World NF Awareness Day

Children’s Tumor Foundation Announces Today is World NF Awareness Day For 2 Million People Around the Globe

On May 17, hundreds of landmarks around the world will “Shine a Light on NF” to raise awareness for genetic disorder that causes tumors and has no cure at this time

The Children’s Tumor Foundation is pleased to announce that in recognition of NF Awareness Month architectural icons across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of the NF cause. NF is a genetic disorder that affects 1 in 3,000 births of all populations and causes tumors to grow on nerves throughout the body. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. There is not yet a cure.

Launched by the Children’s Tumor Foundation in 2014 to increase public knowledge of this critical disease, the Shine a Light on NF campaign has grown substantially over the years. Once again, the Children’s Tumor Foundation is partnering with NF organizations across the globe to increase the number of architectural icons that light up in 2018, as well as to extend the reach of the NF campaign globally.

Participating landmarks include Niagara Falls and the Cobo Center (Detroit) in the United States; the National Theatre (London) and Edinburgh Castle (Edinburgh) in the United Kingdom; Swarovski Crystal World (Wattens) and LENTOS Kunstmuseum (Linz) in Austria; Canada Place (Vancouver) and the CN Tower (Toronto) in Canada; and Loggia dei Lanzi Piazza Signoria (Firenze) in Italy; among many others. Nearly 200 landmarks will light up, spanning 11 countries. CTF’s campaign to literally shine a light on NF through building lightings has attracted interest and partners worldwide, including the U.K.-based Neuro Foundation, NF Kinder (Austria), the Tumour Foundation of British Columbia, Neurofibromatosis Society of Ontario, the ANFQ L’Association de la neurofibromatose du Québec, LINFA Onlus (Italy) and ANF onlus Italy, among others.

“NF Awareness Month is a time when the NF community unites as one voice, and we’re inspired by everyone’s commitment and partnership in our mission to end NF,” said Simon Vukelj, Vice President, Marketing and Communications, of the Children’s Tumor Foundation. “The Children’s Tumor Foundation is grateful to all involved in this year’s NF awareness campaign – patients, doctors, researchers, volunteers, donors, corporations, organizations, and local governments.”

Shine a Light on NF is one part of a month-long awareness campaign that is comprised of online and offline events designed to educate the community about this under-recognized genetic disorder. The Children’s Tumor Foundation leads this effort with the “#EndNF” and “I Know a Fighter” initiatives. In addition, events are held in cities across the country and around the world to raise awareness, raise money for research, and connect the NF community.

In addition to “Shine a Light on NF,” 28 states in the U.S. have issued proclamations declaring May as NF Awareness Month or May 17 as NF Awareness Day: Alabama, Arkansas, California, Colorado, Delaware, Florida, Georgia, Idaho, Illinois, Kansas, Kentucky, Massachusetts, Michigan, Missouri, Montana, New York, North Carolina, North Dakota, Ohio, Pennsylvania, South Carolina, Tennessee, Utah, Vermont, Washington, Wisconsin, and Wyoming. A list of the 34 cities that have also issued proclamations can be found online at http://www.ctf.org/get-involved/proclamations.

A listing of local NF Walks, NF Endurance events, I Know a Fighter 5Ks, and local community fundraisers taking place all across the country to raise money to fund NF research and recognize the positive spirit and resolve of local NF Heroes and their families can be found online at ctf.org/calendar.

Building on last year’s well-received collection of portraits and essays of adults living with NF, the Children’s Tumor Foundation released a new class of stories in the ‘This is NF’ photo series by award-winning photojournalist Craig Warga, an NF parent who set out to inspire his young son who lives with NF1. This collection is about people living with neurofibromatosis – not just living, but succeeding and thriving. The NF story can be one full of hurdles – diagnosis, symptoms, doctor appointments, MRI scans, surgeries and/or clinical trials. With this project, we’re telling a side of the NF story that isn’t often told: the passion that those living with NF bring to their daily lives, to their work, their goals, their relationships, the things they want to get out of life, with or without NF. The full collection is available online at ctf.org/thisisnf.

Official merchandise with “I Know a Fighter,” “Born a Fighter,” and End NF imagery, is available for purchase online at www.ctf.org/store. All purchases support the efforts of the Children’s Tumor Foundation.

The Children’s Tumor Foundation is committed to finding effective treatments for the millions of people worldwide living with neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.

For more information on the Children’s Tumor Foundation, as well as all the NF Awareness Month campaign initiatives, please visit www.ctf.org/nfawareness.

Shine A Light on NF is back for World NF Awareness Day 2018!

The Nero Foundation have teamed up with The Children’s Tumor Foundation in the USA to light up buildings across the World blue and green to Shine A Light on Neurofibromatosis again.

After the huge successes we have had with this campaign, we have officially partnered with Children’s Tumor Foundation to bring the Shine A Light campaign back to the UK in 2018. NF Kinder in Austria will also be joining this campaign once again this year.

These places will light up blue and/or green, the colors of Neurofibromatosis (NF).

 Light up blue (and green, if you have the capacity for multiple colors) on May 17, World NF Awareness Day. (Or any other day available in May.)

Buildings confirmed to Shine A Light on NF:

ALABAMA

Children’s of Alabama Russell Building, Birmingham (May 1-31)
UAB Hugh Kaul Genetics Building, Birmingham

ARKANSAS

Big Dam Bridge, Little Rock
Two Rivers Park Bridge, Little Rock
Union Plaza Building, Little Rock

COLORADO

Denver City and County Building Rotunda, Denver (April 30)

CONNECTICUT

20 Church Street, Hartford

FLORIDA

Amway Center Spire, Orlando
Bank of America Plaza at Las Olas City Centre, Fort Lauderdale
Orlando Eye, Orlando (May 2)
ORLANDO sign, Orlando
Lake Eola Fountain, Orlando
See Art Orlando: Astrogenesis II, Global Convergence, Take Flight, Union, and Cedar of Lebanon, Orlando
Tower of Light, Orlando

GEORGIA

King and Queen Buildings, Atlanta

IDAHO

8th and Main, Boise (May 14-20)
Jack’s Urban Meeting Place (JUMP)
US Bank Building, Boise (May 14-20)

ILLINOIS

The Wrigley Building, Chicago

INDIANA

Indianapolis Power & Light Company, Indianapolis

KANSAS

Bowersock Mills & Power Company, Lawrence (May 1-31)
Landmark National Bank, Lawrence
Lied Center of Kansas, Lawrence
TreanorHL, Lawrence

KENTUCKY

Mt. Sterling Police Station, Mt. Sterling
Gazebo Park, Mt. Sterling

MASSACHUSETTS

The Prudential Center, Boston

MICHIGAN

1505 Woodward, Detroit (May 1-31)
Ally Detroit Center, Detroit (May 1-31)
Ally Detroit Center Monument Sign, Detroit (May 1-31)
Buhl Building, Detroit (May 1-31)
Chase Bank, Detroit (May 1-31)
Cobo Center, Detroit (May 1-31)
Comerica Park, Detroit
Federal Reserve Building, Detroit (May 1-31)
First National Building, Detroit (May 1-31)
Fisher Building, Detroit (May 1-31)
Ford Field, Detroit (May 1-31)
Fox Theatre, Detroit
Greektown Casino-Hotel, Detroit (May 1-31)
Little Caesars Arena, Detroit
Madison, Detroit (May 1-31)
One Campus Martius, Detroit (May 1-31)
One Kennedy Square
One Woodward, Detroit (May 1-31)
Penobscot Building, Detroit
Renaissance Center, Detroit (May 1-31)
The Z, Detroit (May 1-31)

MINNESOTA

Enger Tower, Deluth (May 19)
Sperry Tower, Eagan

MISSOURI

Kansas City Power & Light Building (May 9-10)

NEBRASKA

Woodmen Tower, Omaha

NEW YORK

Mid-Hudson Bridge, Poughkeepsie (May 10)
National Grid, Syracuse
Niagara Falls, Niagara
The Peace Bridge, Buffalo
Rundel Memorial Library Building, Rochester (May 12-17)

NORTH CAROLINA

615 S. College Street, Charlotte
Adams Outdoor, Charlotte
Ally Bank, Charlotte
NASCAR Hall of Fame, Charlotte
Romare Bearden Park, Charlotte
Southpark Towers Fountain, Charlotte
The Vue Charlotte, Charlotte
Wells Fargo’s Duke Energy Center, Charlotte

OHIO

JACK Cincinnati Casino & Garage, Cincinnati
JACK Cleveland Casino Sky Bridge, Cleveland (May 1-31)
Quicken Loans Arena, Cleveland (May 1-31)
Quicken Loans Arena Humongotron, Cleveland
Summit Park, Blue Ash (May 13-20)
Terminal Tower, Cleveland

PENNSYLVANIA

PECO Crown Lights, Philadelphia (May 1-3)

RHODE ISLAND

Blue Cross, Blue Shield of RI, Providence

SOUTH DAKOTA

Falls Park, Sioux Falls

TENNESSEE

Korean Way Veterans Memorial Bridge, Nashville (May 18)

TEXAS

Bank of America Plaza, San Antonio (May 1-31)
Children’s Hospital of San Antonio, San Antonio
City Hall, Houston (May 19)
The Weston Centre Plaza Fountain Lights, San Antonio

UTAH

Reagan Outdoor Advertising, Salt Lake City

VIRGINIA

Science Museum of Virginia, Richmond
Virginia Air & Space Center, Hampton
Virginia Aquarium & Marine Science Center, Virginia Beach

WASHINGTON

SR 520 Bridge, Seattle (May 16-17)

WISCONSIN

Mitchell Park Horticultural Conservatory, Domes (May 17-19)

 

INTERNATIONAL

AUSTRIA

ARS Electronica Center, Linz
Casino Baden, Baden
Casino Bregenz, Bregenz
Casino Graz, Graz
Casino Innsbruck, Innsbruck
Casino Kitzbühel, Kitzbühel
Casino Kleinwalsertal, Kleinwalsertal
Casino Linz, Linz
Casino Salzburg, Salzburg
Casino Seefeld, Seefeld
Casino Velden. Velden
Casino Wien, Vienna
Casino Zell am See, Zell am See
Fortress Kufstein, Kufstein
Fountain Schwarzenbergplatz, Vienna
Gaislachkoglbahn, Sölden
LENTOS Kunstmuseum Linz (LENTOS artmuseum), Linz
Marienbrücke Bridge, Vienna
Murinsel, Graz
Pulverturm Eisenstadt, Eisenstadt
Roßauerbrücke Bridge, Vienna
Salztorbrücke Bridge, Vienna
Schwedenbrücke Bridge, Vienna
Swarovski Crystal World, Wattens
Swingbridge Highline179, Reutte
Town Hall, Eisenstadt
Town Hall, Innsbruck
Welios Science Center, Wels
Wiener Riesenrad (Vienna Ferris Wheel), Vienna

CANADA

Alberta
High Level Bridge Canada, Edmonton
Reconciliation Bridge, Calgary

British Columbia
BC Place, Vancouver (May 18)
Canada Place, Vancouver
City Hall, Vancouver
Science World of BC, Vancouver

Ontario
3D Toronto Sign, Toronto
CN Tower, Toronto
Skylon Tower, Niagara Falls
Welland Bridge, Welland

Quebec
City Hall, Sherbrooke
Tour Olympique of Montréal (Olympique Tower), Montreal

ENGLAND

Blackpool Tower, Blackpool
Bridgewater Place, Leeds
Broadgate Columns, Coventry
Christchurch Bridge, Reading
City Hall Clock Tower, Bradford
Everyman Playhouse, Liverpool
First Direct Arena, Leeds
Forster Square Arches, Bradford
Gateshead Millennium Bridge, Newcastle
Granary Square Fountains, London
Hastings Pier, Hastings
Heron Tower, Heron
HMS Raleigh, Plymouth
Huf Haus, Weybridge
Margaret McMillan Tower, Bradford
Merchant Square Fountain, Paddington
Mirror Pool, Bradford
National Theatre, London
O2 Academy, Leeds
One City Square, Leeds
Portsmouth Guildhall, Portsmouth
Queens Hotel, Leeds
Royal Border Bridge, Berwick-Upon-Tweed
Smeaton’s Tower, Plymouth
Spinnaker Tower, Portsmouth
Steve Prescott Bridge, St. Helens
The Crucible Theatre, Sheffield
The SSE Arena, Wembley
Tower 42 (Natwest Tower), London
University of Liverpool School of Engineering, Liverpool
Yvonne Arnaud Theatre, Guildford

ISLE OF MAN

Tower of Refuge

ITALY

CGIL Camera del Lavoro, Torre del Greco
Loggia dei Lanzi (Pizza Signoria), Firenze
Ingresso MAV (Museo Archeologico Virtuale), Ercolano
Ingresso Scavi Archeologici, Ercolano
Orologio della Torre Civica, Latina
Palazzo Baronale, Torre del Greco
Palazzo Loggia, Brescia
Porta Lambertina, Senigallia

NEW ZEALAND

Christchurch Airport Terminal and Airways Tower

NORTHERN IRELAND

Belfast Castle, Belfast
Civic Centre, Antrim
Crumlin Road Jail
Lagan Weir Footbridge, Belfast
Mosley Mill, Newtownabbey
Town Hall, Ballyclare

REPUBLIC OF IRELAND

Kilkenny Castle, Kilkenny

SCOTLAND

Edinburgh Castle, Edinburgh
Falkirk Wheel, Falkirk
Queen Victoria Statue, RSA Building, Falkirk
The Kelpies, Falkirk
Titan Crane, Clydebank

WALES

St. David’s Hotel and Spa, Cardiff

Examples of Shine A Light on NF Buildings

Tower 42 (Natwest Tower), London

Tower 42 (Natwest Tower), London

Recruited by The Neuro Foundation
Merchant Square Fountain, Paddington

Merchant Square Fountain, Paddington

Recruited by The Neuro Foundation
Granary Square Fountains, London

Granary Square Fountains, London

Recruited by The Neuro Foundation
National Theatre, London

National Theatre, London

Recruited by The Neuro Foundation
The SSE Arena, Wembley

The SSE Arena, Wembley

Recruited by The Neuro Foundation
Heron Tower, London

Heron Tower, London

Recruited by The Neuro Foundation
Spinnaker Tower, Portsmouth

Spinnaker Tower, Portsmouth

Recruited by The Neuro Foundation
Portsmouth Guildhall, Portsmouth

Portsmouth Guildhall, Portsmouth

Recruited by The Neuro Foundation
Yvonne Arnaud Theatre, Guildford

Yvonne Arnaud Theatre, Guildford

Recruited by The Neuro Foundation
Blackpool Tower, Blackpool

Blackpool Tower, Blackpool

Recruited by The Neuro Foundation
HMS Raleigh, Plymouth

HMS Raleigh, Plymouth

Recruited by Lee Bates
Smeaton's Tower, Plymouth.

Smeaton’s Tower, Plymouth.

Recruited by The Neuro Foundation
Forster Square Arches, Bradford

Forster Square Arches, Bradford

Recruited by The Neuro Foundation
Mirror Pool, Bradford

Mirror Pool, Bradford

Recruited by The Neuro Foundation
City Hall Clock Tower, Bradford

City Hall Clock Tower, Bradford

Recruited by The Neuro Foundation
Margaret McMillan Tower, Bradford

Margaret McMillan Tower, Bradford

Recruited by The Neuro Foundation
Everyman Playhouse, Liverpool

Everyman Playhouse, Liverpool

Recruited by The Neuro Foundation
University of Liverpool School of Engineering, Liverpool

University of Liverpool School of Engineering, Liverpool

Recruited by The Neuro Foundation
Broadgate Columns, Coventry

Broadgate Columns, Coventry

Recruited by The Neuro Foundation
The Crucible Theatre, Sheffield

The Crucible Theatre, Sheffield

Recruited by The Neuro Foundation
Christchurch Bridge, Reading

Christchurch Bridge, Reading

Recruited by The Neuro Foundation
Steve Prescott Bridge, St Helens.

Steve Prescott Bridge, St Helens.

Recruited by The Neuro Foundation
First Direct Arena, Leeds.

First Direct Arena, Leeds.

Recruited by The Neuro Foundation
One City Square, Leeds.

One City Square, Leeds.

Recruited by The Neuro Foundation
O2 Academy, Leeds.

O2 Academy, Leeds.

Recruited by The Neuro Foundation
Bridgewater Place, Leeds

Bridgewater Place, Leeds

Recruited by The Neuro Foundation
Queens Hotel Leeds

Queens Hotel Leeds

Recruited by The Neuro Foundation
Gateshead Millennium Bridge

Gateshead Millennium Bridge

Recruited by The Neuro Foundation
Huf Haus, Weybridge

Huf Haus, Weybridge

Recruited by The Neuro Foundation
Tower of Refuge, Isle of Man

Tower of Refuge, Isle of Man

Recruited by The Neuro Foundation
Royal Border Bridge, Berwick upon Tweed.

Royal Border Bridge, Berwick upon Tweed.

Recruited by The Neuro Foundation
Queen Victoria statue, RSA Building, Scotland

Queen Victoria statue, RSA Building, Scotland

Recruited by The Neuro Foundation
The Kelpies, Falkirk, Scotland

The Kelpies, Falkirk, Scotland

Recruited by The Neuro Foundation
Falkirk Wheel, Scotland

Falkirk Wheel, Scotland

Recruited by The Neuro Foundation
St David's Hotel and Spa, Cardiff

St David’s Hotel and Spa, Cardiff

Recruited by The Neuro Foundation
Hastings Pier, Hastings

Hastings Pier, Hastings

Recruited by The Neuro Foundation
Edinburgh Castle, Scotland

Edinburgh Castle, Scotland

Recruited by The Neuro Foundation
Titan Crane, Clydebank

Titan Crane, Clydebank

Recruited by The Neuro Foundation
Lagan Weir Footbridge, Belfast

Lagan Weir Footbridge, Belfast

Recruited by The Neuro Foundation
Crumlin Road Jail, Belfast

Crumlin Road Jail, Belfast

Recruited by Lisa Stringer
Belfast Castle, Northern Ireland

Belfast Castle, Northern Ireland

Recruited by Lisa Stringer
Mossley Mil, Newtownabbey Northern Ireland.

Mossley Mil, Newtownabbey Northern Ireland.

Recruited by The Neuro Foundation
Civic Centre, Antrim Northern Ireland.

Civic Centre, Antrim Northern Ireland.

Recruited by The Neuro Foundation
Kilkenny Castle, Kilkenny, Republic of Ireland

Kilkenny Castle, Kilkenny, Republic of Ireland

Recruited by NFA Ireland
Town Hall, Ballyclare Northern Ireland.

Town Hall, Ballyclare Northern Ireland.

Recruited by The Neuro Foundation
Town Hall, Ballyclare Northern Ireland.

Town Hall, Ballyclare Northern Ireland.

Recruited by The Neuro Foundation

More info!

If you or your child has NF feel free to join the NF Registry.

You can learn more about NF at EndNF.com

 

Check out the End NF Car in Corbin, KY.

End NF Car

 

About Children’s Tumor Foundation

The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.

Info from Press Releases and other NF Related Websites

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Categories: Christian End NF End NF Car Neurofibromatosis NF World NF Day

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Steve Patterson

My name is Steve Patterson and I am saved through the blood of Jesus Christ. I have been blogging at Courageous Christian Father since 2012, however, I have been blogging since around 2004. I listen to nothing but Christian Music. I work as a graphic designer.

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