AJ Alveshere (she/her)
@ajalveshere.bsky.social
Archaeologist, biological anthropologist, geneticist. Mom, spouse, cat and dog person.
Because federal funding for NF research has been canceled this year, CTF's research funding has become more important than ever. For the next six days, all donations will be matched to double each donor's impact.
go.ctf.org/donate
go.ctf.org/donate
May 17, 2025 at 3:54 PM
Because federal funding for NF research has been canceled this year, CTF's research funding has become more important than ever. For the next six days, all donations will be matched to double each donor's impact.
go.ctf.org/donate
go.ctf.org/donate
The Children's Tumor Foundation (CTF) created the NF awareness graphics that I've been sharing. CTF also raises money for research to find better treatments, and maybe someday a cure, for the NF disorders.
May 17, 2025 at 3:54 PM
The Children's Tumor Foundation (CTF) created the NF awareness graphics that I've been sharing. CTF also raises money for research to find better treatments, and maybe someday a cure, for the NF disorders.
May 17th is World NF Awareness Day. This date was chosen because the gene that causes NF1 (the most common form of NF) is located on Chromosome 17.
#NFawareness #EndNF
#NFawareness #EndNF
May 17, 2025 at 3:54 PM
May 17th is World NF Awareness Day. This date was chosen because the gene that causes NF1 (the most common form of NF) is located on Chromosome 17.
#NFawareness #EndNF
#NFawareness #EndNF
Once formally diagnosed with NF1, regular screenings for tumor growth and other symptoms can help to catch problems early and make interventions more effective.
#NFAwareness #EndNF 3/3
#NFAwareness #EndNF 3/3
May 14, 2025 at 8:36 PM
Once formally diagnosed with NF1, regular screenings for tumor growth and other symptoms can help to catch problems early and make interventions more effective.
#NFAwareness #EndNF 3/3
#NFAwareness #EndNF 3/3
Called "Café-au-Lait" spots, or CALS, these are often the first symptom of the NF1 disorder.
If a child has six or more CALS the size of a quarter or larger, testing for the NF1 disorder is recommended. 2/3
If a child has six or more CALS the size of a quarter or larger, testing for the NF1 disorder is recommended. 2/3
May 14, 2025 at 8:36 PM
Called "Café-au-Lait" spots, or CALS, these are often the first symptom of the NF1 disorder.
If a child has six or more CALS the size of a quarter or larger, testing for the NF1 disorder is recommended. 2/3
If a child has six or more CALS the size of a quarter or larger, testing for the NF1 disorder is recommended. 2/3
Our kiddo was officially diagnosed with NF1 after a blood DNA test at eight months of age. NF1 was suspected at his two-month well-check when his pediatrician counted more than 25 tan birthmark-like spots on his skin. 1/3
May 14, 2025 at 8:36 PM
Our kiddo was officially diagnosed with NF1 after a blood DNA test at eight months of age. NF1 was suspected at his two-month well-check when his pediatrician counted more than 25 tan birthmark-like spots on his skin. 1/3
Before we even began trying to conceive, I started taking pre-natal vitamins and avoiding foods, drinks, and chemicals that could harm a developing baby. My efforts likely helped prevent other problems, but NF1 was encoded in my son's DNA from the very beginning.
#NFawareness #EndNF
#NFawareness #EndNF
May 7, 2025 at 1:31 PM
Before we even began trying to conceive, I started taking pre-natal vitamins and avoiding foods, drinks, and chemicals that could harm a developing baby. My efforts likely helped prevent other problems, but NF1 was encoded in my son's DNA from the very beginning.
#NFawareness #EndNF
#NFawareness #EndNF
These new mutations arise at random in sperm, eggs, and embryos and are not caused by any choices that the parent made.
This was especially frustrating for me because I had been militant about doing everything in my power to have a healthy baby.
This was especially frustrating for me because I had been militant about doing everything in my power to have a healthy baby.
May 7, 2025 at 1:31 PM
These new mutations arise at random in sperm, eggs, and embryos and are not caused by any choices that the parent made.
This was especially frustrating for me because I had been militant about doing everything in my power to have a healthy baby.
This was especially frustrating for me because I had been militant about doing everything in my power to have a healthy baby.
My son is the first in our family to have NF but, if he has children someday, each child would have an approximately 50% chance of inheriting the disorder.
May 7, 2025 at 1:31 PM
My son is the first in our family to have NF but, if he has children someday, each child would have an approximately 50% chance of inheriting the disorder.
NF affects 1 in every 2000 people worldwide. About half of these people inherited NF from a parent. The other half are each the first person with NF in their family. In these cases, a new mutation occured in the sperm or egg that they developed from, or in the very earliest stages of embryo growth.
May 7, 2025 at 1:31 PM
NF affects 1 in every 2000 people worldwide. About half of these people inherited NF from a parent. The other half are each the first person with NF in their family. In these cases, a new mutation occured in the sperm or egg that they developed from, or in the very earliest stages of embryo growth.
A friend of ours passed away suddenly last year when an NF tumor in her chest created too much pressure on her heart. Other friends are losing their vision, hearing, and mobility due to NF tumors.
Federal funding for NF research has been eliminated for at least the next year.
#NFawareness #EndNF
Federal funding for NF research has been eliminated for at least the next year.
#NFawareness #EndNF
May 4, 2025 at 5:40 PM
A friend of ours passed away suddenly last year when an NF tumor in her chest created too much pressure on her heart. Other friends are losing their vision, hearing, and mobility due to NF tumors.
Federal funding for NF research has been eliminated for at least the next year.
#NFawareness #EndNF
Federal funding for NF research has been eliminated for at least the next year.
#NFawareness #EndNF
My son's scariest tumor is on his brain stem. It could affect brain activities, disrupt the flow of cerebrospinal fluid, or damage his spinal cord. Risks include behavior changes, chronic pain, paralysis, or death. He needs frequent MRI scans. Eventually, he may need chemotherapy or a risky surgery.
May 4, 2025 at 5:40 PM
My son's scariest tumor is on his brain stem. It could affect brain activities, disrupt the flow of cerebrospinal fluid, or damage his spinal cord. Risks include behavior changes, chronic pain, paralysis, or death. He needs frequent MRI scans. Eventually, he may need chemotherapy or a risky surgery.
Neurofibromatosis (NF) disorders cause tumors to form on nerves. The effects vary greatly, depending on which organs or systems they impact. The number of tumors typically increases over time. Because they grow on nerves, surgery can be very risky, and they grow back more aggressively after surgery.
May 4, 2025 at 5:40 PM
Neurofibromatosis (NF) disorders cause tumors to form on nerves. The effects vary greatly, depending on which organs or systems they impact. The number of tumors typically increases over time. Because they grow on nerves, surgery can be very risky, and they grow back more aggressively after surgery.
Schwannomatosis is a term that describes the rarer varieties of NF which affect one in every 20,000 births. The name comes from "schwannoma" which is a certain type of nerve tumor.
NF Type 2 (NF2) is the most common of the Schwannomatosis disorders. One in every 25,000 babies is born with NF2.
NF Type 2 (NF2) is the most common of the Schwannomatosis disorders. One in every 25,000 babies is born with NF2.
May 3, 2025 at 3:51 PM
Schwannomatosis is a term that describes the rarer varieties of NF which affect one in every 20,000 births. The name comes from "schwannoma" which is a certain type of nerve tumor.
NF Type 2 (NF2) is the most common of the Schwannomatosis disorders. One in every 25,000 babies is born with NF2.
NF Type 2 (NF2) is the most common of the Schwannomatosis disorders. One in every 25,000 babies is born with NF2.
NF Type 1 (NF1) is the most common variety of NF. Approximately one child out of every 2,500 born in every community around the world is born with the NF1 disorder, including one of my own children.
The study of NF1 from an anthropological perspective is a primary area of my professional research.
The study of NF1 from an anthropological perspective is a primary area of my professional research.
May 3, 2025 at 3:51 PM
NF Type 1 (NF1) is the most common variety of NF. Approximately one child out of every 2,500 born in every community around the world is born with the NF1 disorder, including one of my own children.
The study of NF1 from an anthropological perspective is a primary area of my professional research.
The study of NF1 from an anthropological perspective is a primary area of my professional research.
May is Neurofibromatosis (NF) Awareness Month
Neurofibromatosis, called "NF" for short, is a long word that describes a collection of genetic conditions with overlapping symptoms. The name refers to tumors called "neurofibromas" that can grow on nerves throughout the body.
#NFAwareness #ENDNF
Neurofibromatosis, called "NF" for short, is a long word that describes a collection of genetic conditions with overlapping symptoms. The name refers to tumors called "neurofibromas" that can grow on nerves throughout the body.
#NFAwareness #ENDNF
May 3, 2025 at 3:51 PM
May is Neurofibromatosis (NF) Awareness Month
Neurofibromatosis, called "NF" for short, is a long word that describes a collection of genetic conditions with overlapping symptoms. The name refers to tumors called "neurofibromas" that can grow on nerves throughout the body.
#NFAwareness #ENDNF
Neurofibromatosis, called "NF" for short, is a long word that describes a collection of genetic conditions with overlapping symptoms. The name refers to tumors called "neurofibromas" that can grow on nerves throughout the body.
#NFAwareness #ENDNF
Very sad news. But, let's take a moment to celebrate the life of this amazing bonobo who provided myriad insights into the fascinating mind and abilities of his species.❤️
March 20, 2025 at 1:58 AM
Very sad news. But, let's take a moment to celebrate the life of this amazing bonobo who provided myriad insights into the fascinating mind and abilities of his species.❤️
More from the same post
January 28, 2025 at 6:32 PM
More from the same post
A round-up of remarks that provide context on the current situation. From a post on Facebook by @rebeccasolnit.bsky.social
www.facebook.com/share/1BBJdv...
www.facebook.com/share/1BBJdv...
January 28, 2025 at 6:30 PM
A round-up of remarks that provide context on the current situation. From a post on Facebook by @rebeccasolnit.bsky.social
www.facebook.com/share/1BBJdv...
www.facebook.com/share/1BBJdv...
Germs are constantly mutating to try to outpace our immune systems. It's basic biology. If we miss doses of an infection-fighting drug, the most drug-resistant versions of the virus (or bacteria) will quickly replicate themselves & create an infection that the drug won't be as effective at fighting.
January 26, 2025 at 12:37 PM
Germs are constantly mutating to try to outpace our immune systems. It's basic biology. If we miss doses of an infection-fighting drug, the most drug-resistant versions of the virus (or bacteria) will quickly replicate themselves & create an infection that the drug won't be as effective at fighting.
As the relative of a child who has a brain stem tumor and a genetic tumor disorder that has few effective treatments and no cure, this directly affects my family in really scary ways. 🙁
January 26, 2025 at 7:27 AM
As the relative of a child who has a brain stem tumor and a genetic tumor disorder that has few effective treatments and no cure, this directly affects my family in really scary ways. 🙁
Remember how we used to hear about this kind of thing happening in foreign dictatorships? And how we'd feel lucky to live in a nation that guaranteed freedom of speech? 😕
January 26, 2025 at 5:13 AM
Remember how we used to hear about this kind of thing happening in foreign dictatorships? And how we'd feel lucky to live in a nation that guaranteed freedom of speech? 😕
"Those that fail to learn from history are doomed to repeat it."
~Winston Churchill, 1948
~Winston Churchill, 1948
January 25, 2025 at 8:28 PM
"Those that fail to learn from history are doomed to repeat it."
~Winston Churchill, 1948
~Winston Churchill, 1948