Helpline: 1‑267‑338‑4262 |Β helpline@genetic.org
AXYS - The Association for X&Y Chromosome Variations
Helpline: 1‑267‑338‑4262 | info@genetic.org

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AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

“Our proposed time for an open house on Zoom is the 2nd Tuesday of the month. We will host the room from 5-10 pm MT.”

“Come in when you can and leave when you want, we don’t expect anyone to stay the whole night, but if you feel like it you are welcome.Β  If this time never works for you, please tell us and we’ll find a compromise.”

“We would like to keep this group open to all X&Y variations and subgroups because we all have a lot in common.Β  Show up, talk about what’s going on in your life, celebrate successes, and vent about the difficult moments with people who understand. Tap into your community.”

“Separate subgroups are really helpful and we’ll make sure that everyone is made aware of the different groups. The best place to look is the support group page on the AXYS website. And we’ll be talking in the group about how to find these other groups.

Remember that if you don’t feel like you need support right now, it’s still worth showing up because you may meet someone who needs the answers that only you have.”

“Look forward to seeing you,
AXYS Rocky Mountain Chapter”
– Rob & Jamie Lee

2024-06-20T16:06:08-04:00Categories: |

BMJ Best Practice – Klinefelter Syndrome

Article Title: BMJ Best Practice Klinefelter Syndrome

Authors: Alan Rogol, Gary Butler, and Claus Gravholt

Date of Publication: June 4, 2024

β€œPopulation mortality and morbidity studies suggest there is a slight but not significant lowering of life expectancy in individuals with Klinefelter syndrome (KS). The average lifespan has been found to be reduced by 1.5 to 2 years, with morbidity and mortality increased due to a wide number of conditions, including diabetes, cerebrovascular disease, and breast cancer. Higher rates of osteoporosis and fractures are also important to note.

Appropriate treatment with testosterone can alleviate the portion of excess risk that is due to conditions associated with hypergonadotropic hypogonadism, but some of the elevated risk is likely intrinsic to the chromosome aberration and therefore not corrected by testosterone treatment.

The increased morbidity and mortality in individuals with KS may also be partially explained by their often lower socioeconomic status, with cohort data suggesting shorter education, higher rates of unemployment, lower average incomes, and earlier average age at retirement compared with men without KS.

It is important to note that most boys and men with KS are never diagnosed so the reported data likely reflects more severe phenotypes of the condition.”

Read more

eXtraordinarY Kids Clinic/Mid-Atlantic Region Support Group Meeting

Location

Nemours Children’s Hospital | Wilmington, DE | 3rd floor | Classrooms 3 and 4

Agenda

  1. Overview of the clinic by the clinic Co-Director
  2. Speakers to discuss Transition to Adult Services and the GALAXY registry (discussion will be appropriate for all ages)
  3. Q&A

Attendees are welcome to bring snacks if they prefer. Light refreshments will be provided.

It may be helpful to review this document about the transition to adulthood ahead of the meeting.

2024-06-18T13:32:59-04:00Categories: |

AXYS Chat Pop-in

1st and 3rd Fridays of the Month | 1-3pm Eastern Time

Start time in other regions: 12pm Central | 11am Mountain | 10am Pacific

AXYS Chat Pop-ins are meeting spaces for anyone 18 and up with any X and/or Y variation! We would like to stress that these meetings are intended ONLY for those with an X/Y variation.

Come hang out in an open, friendly environment. Chat with others or just check things out with no obligation to speak or be on camera. Celebrate your accomplishments and support others in their challenges.

Think of it as a room with an open-door policy; come to whatever meetings you want; come and go as you please within the 2-hour time period.

Your privacy is very important to us. AXYS will not record any of these meetings and we ask that you please respect the privacy of other attendees. We also ask that you abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

This meeting is not intended to be therapy and should not be used as a substitute for the services of a mental health professional.

2024-05-31T14:01:07-04:00Categories: |

AXYS Chat Pop-in

1st and 3rd Fridays of the Month | 1-3pm Eastern Time

Start time in other regions: 12pm Central | 11am Mountain | 10am Pacific

AXYS Chat Pop-ins are meeting spaces for anyone 18 and up with any X and/or Y variation! We would like to stress that these meetings are intended ONLY for those with an X/Y variation.

Come hang out in an open, friendly environment. Chat with others or just check things out with no obligation to speak or be on camera. Celebrate your accomplishments and support others in their challenges.

Think of it as a room with an open-door policy; come to whatever meetings you want; come and go as you please within the 2-hour time period.

Your privacy is very important to us. AXYS will not record any of these meetings and we ask that you please respect the privacy of other attendees. We also ask that you abide by the AXYS Activities Conduct Policy: https://genetic.org/axys-activities-conduct-policy/

This meeting is not intended to be therapy and should not be used as a substitute for the services of a mental health professional.

2024-05-31T13:59:57-04:00Categories: |

AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

“Our proposed time for an open house on Zoom is the 2nd Tuesday of the month. We will host the room from 5-10 pm MT.”

“Come in when you can and leave when you want, we don’t expect anyone to stay the whole night, but if you feel like it you are welcome.Β  If this time never works for you, please tell us and we’ll find a compromise.”

“We would like to keep this group open to all X&Y variations and subgroups because we all have a lot in common.Β  Show up, talk about what’s going on in your life, celebrate successes, and vent about the difficult moments with people who understand. Tap into your community.”

“Separate subgroups are really helpful and we’ll make sure that everyone is made aware of the different groups. The best place to look is the support group page on the AXYS website. And we’ll be talking in the group about how to find these other groups.

Remember that if you don’t feel like you need support right now, it’s still worth showing up because you may meet someone who needs the answers that only you have.”

“Look forward to seeing you,
AXYS Rocky Mountain Chapter”
– Rob & Jamie Lee

2024-06-20T16:05:31-04:00Categories: |

Trisomy X Parent Support Group Meeting

Register here

Thank you for signing up! We are happy that you have decided to join us for an informal chat with other families of children with Trisomy X. Please remember that our support calls provide an open space for families to connect, ask questions, and share experiences in a safe and non-judgmental environment. Your mindful participation contributes to creating a supportive community for everyone involved.

We look forward to seeing you!

2024-05-17T16:03:04-04:00Categories: |

AXYS Community Monthly Open House

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

“Our proposed time for an open house on Zoom is the 2nd Tuesday of the month. We will host the room from 5-10 pm MT.”

“Come in when you can and leave when you want, we don’t expect anyone to stay the whole night, but if you feel like it you are welcome.Β  If this time never works for you, please tell us and we’ll find a compromise.”

“We would like to keep this group open to all X&Y variations and subgroups because we all have a lot in common.Β  Show up, talk about what’s going on in your life, celebrate successes, and vent about the difficult moments with people who understand. Tap into your community.”

“Separate subgroups are really helpful and we’ll make sure that everyone is made aware of the different groups. The best place to look is the support group page on the AXYS website. And we’ll be talking in the group about how to find these other groups.

Remember that if you don’t feel like you need support right now, it’s still worth showing up because you may meet someone who needs the answers that only you have.”

“Look forward to seeing you,
AXYS Rocky Mountain Chapter”
– Rob & Jamie Lee

2024-05-12T14:11:12-04:00Categories: |

Evidence-based recommendations for delivering the diagnosis of X&Y chromosome multisomies

Article Title: Evidence-based recommendations for delivering the diagnosis of X&Y chromosome multisomies in children, adolescents, and young adults: an integrative review

Authors: Riggan, Ormond, Allyse, and Close

Date of Publication: April 22, 2024

β€œPatient experiences suggest there should be heightened attention to diagnosis delivery, in reference to the broader ethical and social impacts of a SCM diagnosis. We present recommendations for optimal disclosure of a SCM diagnosis in early and late childhood, adolescence, and young adulthood.”

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