Neurofibromatosis Awareness Day – May 17, 2023

Neurofibromatosis Awareness Day is observed annually on May 17. It is said that thousands of people have neurofibromatosis (N.F.), but they don’t even know it. Besides, there is still no cure for N.F. That’s why the day is observed to raise awareness of this condition, educate people about it, and raise money to support research so that there can be effective treatments for N.F. It’s also to encourage parents to take another look at their children for the signs and symptoms so they can be treated sooner. So, let’s support the people with N.F. and the research to end N.F.

History of Neurofibromatosis Awareness Day

Neurofibromatosis (N.F.) is a condition that causes tumors to grow in the nervous system. There are three types of N.F, — N.F.1, N.F.2, and, schwannomatosis — symptoms include multiple spots on the skin, small benign growths on or under the skin, freckling in the armpits or groin, and scoliosis. In N.F.2, signs can include hearing loss, facial weakness, vision loss, and muscle wasting. Schwannomatosis is the least common type of N.F., and the symptom is pain anywhere in the body, not necessarily in the area of a schwannoma.

These types of neurofibromatosis are a result of mutations in chromosomes. N.F.1 is caused by a mutation on chromosome 17 while N.F.2 is caused by anomalies on chromosome 22; schwannomatosis is caused by a mutation on the SMARCB1 gene. In most cases, symptoms of N.F.1 are mild, but in some cases, they may cause disfiguring and psychological issues. In cases of N.F.2, people may also develop other types of benign brain or spinal tumors. In the case of schwannomatosis, some people may develop several tumors throughout the body.

The tumors in N.F. are generally not cancerous, and half of the people with N.F.1 or N.F.2 inherit it from a parent. Patients affected with N.F.1 or N.F.2 have a 50% chance of passing the N.F. to their offspring. In the case of schwannomatosis, it is mostly not inherited. So far, there is no approved cure for N.F.1 But there are several promising N.F. clinical trials in progress. Although surgical removal of tumors is an option, the preferred treatment is chemotherapy. For children diagnosed with N.F.1, it is recommended that they have an examination each year.

Neurofibromatosis Awareness Day timeline

1800s
Father of Modern Genetics

Gregor Mendel discovers the fundamental laws of inheritance through the study of pea plants.

1882
Neurofibromatosis Type I

Friedrich Daniel von Recklinghausen discovers N.F.1.

1885
Chemotherapy Research Starts

Paul Ehrlich coins the term ‘chemotherapy,’ a chemical treatment to kill cancer.

1901
Mutation

Hugo de Vries coins ‘mutation’ to reference rising in experiments on Oenothera Lamarckian.

Neurofibromatosis Awareness Day FAQs

What is End N.F.?

It is a campaign by the Children’s Tumor Foundation to end N.F.

Does N.F.1 get worse with age?

Adults with N.F.1 will typically develop more neurofibromas gradually.

Can N.F. skip generations?

No, NF1 does not skip generations.

How to Observe Neurofibromatosis Awareness Day

  1. Learn about it

    We should learn more about N.F. to celebrate the day. By doing so, at least we’ll know some things about it — the symptoms, the cause, and the treatments for it.

  2. Spread the word

    Spread the word so that more people know about N.F. Who knows, it may be beneficial for them. Besides, the more people know, the more people can support the research for N.F. treatments.

  3. Give support

    You may want to support organizations involved in ending the N.F. You can volunteer, donate, or participate in a fundraising event held by the organizations.

5 Facts About Neurofibromatosis You Need To Know

  1. It affects millions of people

    N.F. occurs in one in every 3,000 people, and it affects millions of people around the world.

  2. It affects all populations

    Regardless of ethnicity or gender, N.F. affects all populations.

  3. It arises in families with no N.F.

    Approximately half of all cases of N.F. arise in families with no history of the condition.

  4. Progress to end N.F. is great

    According to the Children’s Tumor Foundation, there are 50 N.F.-specific clinical trials.

  5. It is prevalent

    N.F. is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s.

Why Neurofibromatosis Awareness Day is Important

  1. It raises awareness

    N.F. affects millions of people worldwide, and sometimes, people don’t know that they have it. Neurofibromatosis Awareness Day can change that. Hopefully, in the future, there’ll be no more N.F. cases.

  2. To give support to those affected

    We need to support one another to end N.F. Neurofibromatosis Awareness Day can be a means to gather all the support to get to the end of N.F. cases in the world.

  3. We get to show care

    Neurofibromatosis Awareness Day can be a way for us to show that we care. Maybe it’s just a small act like sharing the information, but at least we contribute something.

Neurofibromatosis Awareness Day dates

YearDateDay
2023May 17Wednesday
2024May 17Friday
2025May 17Saturday
2026May 17Sunday
2027May 17Monday

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