Are you wearing blue or green today?

[ChazII]

World NF Day is about raising NF awareness! Help Make NF Visible today by wearing blue & green, the official colors of the NF cause. Have fun and be creative - color your hair, paint your nails, wear a bright colored shirt - your choice! However you #makenfvisible, be sure to post on social media and tag @childrenstumor and #EndNF. The most creative photos might be featured during tonight's Make NF Visible Live global event at 8PM ET at ctf.org/live.

I know that I am not the only one with NF here at DU.

[hlthe2b]

1. I believe you are referring to Neurofibromatosis. I think you would do well to provide

context for those who, unlike me, are not medical people and are unaware of NF. This is a great time to educate. Please take the opportunity.

[LakeArenal]

4. How many times do we ask for context and still folks refuse.

I had no idea about NF. I asked Mr Lake if he knew. He did not.

[ChazII]

12. Thank you, hithe2b.

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

I was trying to get the attention of folks instead of having their eyes glaze over and pass the thread by.

[doc03]

2. I am wearing blue and green but what is World

NF Day?

[ChazII]

9. NF is short for Neurofibromatosis

NF1 is caused by chromosome misspelling on chromosome 17. On May 22 people will be encouraged to once again wear blue or green for NF2 which is caused by chromosome 22 and is the more serious of the two. My son had NF1 as I do.

[Ocelot II]

3. What's NF?

[ChazII]

10. Here is a short explanation. Thank you for asking.

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

[multigraincracker]

5. This?

https://www.ctf.org/get-involved/nf-awareness-month

[LakeArenal]

6. So much for NF awareness.

[marble falls]

7. We need to join an NF unawareness support group.

[ChazII]

11. And now you are aware and you will be ready for May 22

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

Anyone reading this response will now be ready for May 22. The next day to wear blue or green and help others learn a bit about this genetic disorder.

[LakeArenal]

14. And anyone not on the thread won't know or notice what we are wearing.

Maybe if it was fuschia or yellow they might.

[ChazII]

15. Those who have Facebook accounts might know.

You're right LA. However, as the cliche goes if each person reading this thread tells two friends that will be two more than knew yesterday. I have provided links. If anyone on DU wears blue or green on the May 22 but tells friends why on May 21 a few more folks will know.

How would you suggest getting the word out? There are folks here at DU who have told me that they have NF but they have never disclosed that information publicly. I know my communication skills are in desperate need of help. Gillian Anderson's brother had NF1 and she was a spokeswoman for a few years.

Fuchsia is already taken. The NF Endurance Team, they run for a cure, wore neon yellow for many years.

[LakeArenal]

16. Best of luck with it.

[ChazII]

8. I got your attention and you are asking

questions. Please check #5.



https://www.ctf.org/get-involved/nf-awareness-month


While many here loathe Facebook there are many support groups for Neurofibromatosis found on there. My son who passed from a glioblastoma in March of 2020 recently had his portrait painted. You will see it in Rachel's in Memorial for NF1. He is wearing the orange cap, sitting in a his wheelchair with a poster that ends with Never Give Up.

https://www.rmindrup.com/many-faces-of-neurofibromatosis-nf-/nf-in-memoriam/nf1-memorials

Please click on the portraits of the members who are still living. Also check out Reggie Bibbs on Google and the foundation he began Just Ask.

Edited to add: That is my son in the portrait.

[ChazII]

13. Alec Baldwin will be part of World NF Awareness Day

Stars Come Together to Help Kids with Rare Genetic Disorder that Causes Tumors
May 15, 2020, Posted in Fundraiser, Awareness, Community, Press Release, Latest News

Children’s Tumor Foundation to host star-studded event on May 17
to raise funds and awareness for NF, a genetic disorder affecting 2.5 million people worldwide

Hosted by Actor/Producer Jonathan Sadowski, with appearances by Martin Short, Gilbert Gottfried, Alec Baldwin,
Howie Mandel, Paul Schaffer, America’s Got Talent winner Shin Lim,
Emily Deschanel, Top Chef Michael Voltaggio, Jesse McCartney, and others

NEW YORK – On May 17, World NF Awareness Day, actors, musicians, comedians, chefs, magicians, and others will come together for Home is Where the Heart Is, a benefit to support the Children’s Tumor Foundation and to Make NF Visible. NF, short for neurofibromatosis, is a rare genetic disorder that causes tumors to grow on nerves throughout the body and affects all ethnicities, races, and genders equally. In addition to tumors growing anywhere in the body, NF may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in 3,000 people and, while the FDA just approved the first-ever treatment, Koselugo (selumetinib), for inoperable plexiform neurofibromas, there is no cure at this time for NF, which is why it is crucial to Make NF Visible.

Hosted by actor/producer Jonathan Sadowski (ABC Family’s Young & Hungry, Celebrity Top Chef), this virtual benefit will be filled with musical performances by Jesse McCartney, Remi Pereira, formerly of The Tenors, and Emily Osment; a cooking demonstration by Top Chef winner Michael Voltaggio; a magic act from America’s Got Talent winner Shin Lim, and appearances by Emily Deschanel, Danica McKellar, Alec Baldwin, Raina Seitel, Patrick Bruel, Howie Mandel, Paul Schaffer, John Stamos, Bob Sagat, Dave Coulier, Gilbert Gottfried, Martin Short, NFL Hall of Famer Darrell Green, Colorado Rockies’ Ian Desmond, NFL Kicker Nick Folk, WWE stars Mike the Miz and Roman Reigns, and many others. NF patients will also share their stories about why making NF visible is more important now than ever before.

“NF manifests itself differently in every patient, which makes it hard to talk about, hard to understand, and harder to live with, but NF patients and their families are some of the strongest people I know,” said Jonathan Sadowski. “I couldn’t be more excited to host this very special online event, Home is Where the Heart Is, bringing together celebrities, actors, musicians, athletes, and NF Heroes, to make sure the world knows what neurofibromatosis is, and why we need to make NF visible.”

World NF Awareness Day takes place during NF Awareness Month, a dedicated time every year to bring attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives.

For more information about Home is Where the Heart Is, visit ctf.org/heart.

For more information about the Children’s Tumor Foundation, visit ctf.org.

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.