It's our final #FactFriday this month. While around 70% of males with ALD have adrenal insufficiency, it is reported that only 5% of females do.
Remember The Girls
Civic and Social Organizations
Mt Laurel, New Jersey 943 followers
Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions.
About us
Remember The Girls aims to break the stigma facing females impacted by X-linked conditions by providing them with tools to seek support, engage with research, and access family planning options, as well as by advocating for increased attention of medical professionals to the physical, emotional, and reproductive needs of this community.
- Website
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http://rememberthegirls.org
External link for Remember The Girls
- Industry
- Civic and Social Organizations
- Company size
- 1 employee
- Headquarters
- Mt Laurel, New Jersey
- Type
- Nonprofit
- Founded
- 2017
Locations
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Primary
114 Preakness Dr
Mt Laurel, New Jersey 08054, US
Employees at Remember The Girls
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Meghan Kofod
Results-driven Marketing & Communications Professional | Strategist, Implementor, Storyteller | CliftonStrengths: Relator, Ideation, Self-Assurance…
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Julie Cohen
Director of Genetic Counseling Services at Kennedy Krieger Institute
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Tanner Coleman
Certified Genetic Counselor at HudsonAlpha Institute for Biotechnology
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Taylor Kane
Adrenoleukodystrophy & rare disease patient engagement consultant
Updates
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Dr. Eichler has been researching and seeing patients with ALD for 25 years. Listen to the latest episode on our podcast to hear a conversation between Dr. Eichler and co-host Taylor Kane as they discuss the history of ALD, new developments, and symptoms in females. https://lnkd.in/gyyK4D5g
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Females with ALD experiencing symptoms is not rare. This #FactFriday shows that almost 90% experience symptoms related to the disease by age 60.
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Riham is a co-founder of ALD Hope, Canada's first nonprofit organization for ALD. She assists individuals with rare diagnoses in both English and Arabic. Listen to her story as part of our Carrier Connections ALD feature here: https://lnkd.in/eiDvPkyj
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The fact that females with ALD can have symptoms is not a new discovery – it has been known for over 40 years! #FactFriday
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What is a biomarker? A biomarker naturally occurring molecule, gene, or characteristic by which a particular pathological or physiological process, or disease can be identified. #FactFriday
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Thank you, Jana, for joining us for an episode of collectively coeXisting to discuss how you are fighting symptoms of ALD. Listen to her episode here: https://lnkd.in/etk3ZU6Z This month as part of our Carrier Connections series, we are featuring adrenoleukodystrophy (ALD) in partnership with ALD Connect.
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Amniocentesis is a family planning optional for women who are carriers/have an X-linked condition. You can learn more about amniocentesis and other family planning options in Remember The Girls' Family Planning Resource: https://lnkd.in/e758mJPr
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When Isabella was a preteen, she (along with her mother, Beth) was offered genetic testing to determine if she is a manifesting carrier of myotubular myopathy (MTM). However, the results were held from her for years until Beth's advocacy finally allowed Isabella to receive the results she was waiting for. Listen to our full conversation here: https://lnkd.in/ebQg4VNs
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Happy Friday! Our first #FactFriday of the month highlights new terminology put forth by ALD Connect – (a)symptomatic woman with ALD – which includes both asymptomatic and symptomatic females who have an ABCD1 gene mutation causing ALD.
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