Artwork

Content provided by Eric Jorgensen. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Eric Jorgensen or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.
Player FM - Aplicație Podcast
Treceți offline cu aplicația Player FM !

Introduction to the FD / MAS Alliance with Adrienne McBride & Anne Corvelle

1:07:55
 
Distribuie
 

Serii arhivate ("Sursă inactivă" status)

When? This feed was archived on February 26, 2024 15:08 (2M ago). Last successful fetch was on September 06, 2023 08:28 (8M ago)

Why? Sursă inactivă status. Servele noastre nu au putut să preia o sursă valida de podcast pentru o perioadă îndelungată.

What now? You might be able to find a more up-to-date version using the search function. This series will no longer be checked for updates. If you believe this to be in error, please check if the publisher's feed link below is valid and contact support to request the feed be restored or if you have any other concerns about this.

Manage episode 342894324 series 2842580
Content provided by Eric Jorgensen. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Eric Jorgensen or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

What is FD/MAS?


The name of this condition, Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS), can sometimes be confusing. Some people only have affected bones, in which case it might be called FD. When bones and other tissues are affected, it is called MAS. Since both FD and MAS are caused by the exact same gene mutation, and since many people with FD also have other tissues involved, the FD/MAS Alliance and doctors have decided to call it FD/MAS. It is a rare condition caused by a mutation in the gene GNAS. The mutated gene produces a protein, Gs alpha, that is dysfunctional. Gs alpha is a sort of “on/off” switch in cells, and the mutated protein is stuck in the “on” position. Depending on the cell or tissue affected, the “on” switch has a different effect.


Adrienne McBride serves as Executive Director and has 15+ years of working in the nonprofit sector in leadership roles. Her professional experience with the autistic adult community, non-traditional students pursuing higher education, and the chronically homeless have made her a tireless advocate for underserved populations. She is thrilled to work alongside the patients and caregivers of the FD/MAS community to find better answers and better options for all those who suffer from this rare disease. Adrienne received her undergraduate degree in French and Politics from Fairfield University, CT, and her master's degree in business from the University of Maryland.


Anne Corvelle is a parent of a daughter with MAS/PFD. Ann spent over 10 years working in non-profit organizations in Lancaster County, Pennsylvania, currently in fundraising. Besides spending time with her family and working, she is heavily involved in her children’s school and doing whatever work the FD/MAS Alliance asks of her. Ever since her daughter was diagnosed in 2016, she has been on a mission to bring attention to FD/MAS in the hopes of there one day being a treatment or cure for everyone affected by these diseases.


Connect to learn more:


Website: https://fdmasalliance.org/


Twitter: @FDysplasia


Facebook: @fibrousdysplasia


Donate: https://fdmasalliance.org/donate/


For more information about True North Disability Planning:


Web: https://truenorthdisabilityplanning.com/


Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning


Waypoints - https://waypoints.substack.com/


Facebook: @TrueNorthDisabilityPlanning


Twitter: @NeedsNavigator


Resource store (free downloads too) - https://www.teacherspayteachers.com/Store/True-North-Disability-Planning


---
Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/message
Support this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support
Get full access to Waypoints at waypoints.substack.com/subscribe
  continue reading

150 episoade

Artwork
iconDistribuie
 

Serii arhivate ("Sursă inactivă" status)

When? This feed was archived on February 26, 2024 15:08 (2M ago). Last successful fetch was on September 06, 2023 08:28 (8M ago)

Why? Sursă inactivă status. Servele noastre nu au putut să preia o sursă valida de podcast pentru o perioadă îndelungată.

What now? You might be able to find a more up-to-date version using the search function. This series will no longer be checked for updates. If you believe this to be in error, please check if the publisher's feed link below is valid and contact support to request the feed be restored or if you have any other concerns about this.

Manage episode 342894324 series 2842580
Content provided by Eric Jorgensen. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Eric Jorgensen or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

What is FD/MAS?


The name of this condition, Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS), can sometimes be confusing. Some people only have affected bones, in which case it might be called FD. When bones and other tissues are affected, it is called MAS. Since both FD and MAS are caused by the exact same gene mutation, and since many people with FD also have other tissues involved, the FD/MAS Alliance and doctors have decided to call it FD/MAS. It is a rare condition caused by a mutation in the gene GNAS. The mutated gene produces a protein, Gs alpha, that is dysfunctional. Gs alpha is a sort of “on/off” switch in cells, and the mutated protein is stuck in the “on” position. Depending on the cell or tissue affected, the “on” switch has a different effect.


Adrienne McBride serves as Executive Director and has 15+ years of working in the nonprofit sector in leadership roles. Her professional experience with the autistic adult community, non-traditional students pursuing higher education, and the chronically homeless have made her a tireless advocate for underserved populations. She is thrilled to work alongside the patients and caregivers of the FD/MAS community to find better answers and better options for all those who suffer from this rare disease. Adrienne received her undergraduate degree in French and Politics from Fairfield University, CT, and her master's degree in business from the University of Maryland.


Anne Corvelle is a parent of a daughter with MAS/PFD. Ann spent over 10 years working in non-profit organizations in Lancaster County, Pennsylvania, currently in fundraising. Besides spending time with her family and working, she is heavily involved in her children’s school and doing whatever work the FD/MAS Alliance asks of her. Ever since her daughter was diagnosed in 2016, she has been on a mission to bring attention to FD/MAS in the hopes of there one day being a treatment or cure for everyone affected by these diseases.


Connect to learn more:


Website: https://fdmasalliance.org/


Twitter: @FDysplasia


Facebook: @fibrousdysplasia


Donate: https://fdmasalliance.org/donate/


For more information about True North Disability Planning:


Web: https://truenorthdisabilityplanning.com/


Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning


Waypoints - https://waypoints.substack.com/


Facebook: @TrueNorthDisabilityPlanning


Twitter: @NeedsNavigator


Resource store (free downloads too) - https://www.teacherspayteachers.com/Store/True-North-Disability-Planning


---
Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/message
Support this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support
Get full access to Waypoints at waypoints.substack.com/subscribe
  continue reading

150 episoade

Όλα τα επεισόδια

×
 
Loading …

Bun venit la Player FM!

Player FM scanează web-ul pentru podcast-uri de înaltă calitate pentru a vă putea bucura acum. Este cea mai bună aplicație pentru podcast și funcționează pe Android, iPhone și pe web. Înscrieți-vă pentru a sincroniza abonamentele pe toate dispozitivele.

 

Ghid rapid de referință