Remember The Girls (@remember_girls) 's Twitter Profile
Remember The Girls

@remember_girls

Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers

ID: 909617756978405376

linkhttp://rememberthegirls.org calendar_today18-09-2017 03:19:07

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1,1K Followers

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For our final podcast interview of the month, we were joined by Aaron Gardner, 38-year-old man who was diagnosed with ALD 9 years ago. In this episode, we discuss how he is preparing to discuss ALD inheritance with his daughter and more. Listen here: open.spotify.com/episode/12Usa8…

For our final podcast interview of the month, we were joined by Aaron Gardner, 38-year-old man who was diagnosed with ALD 9 years ago. In this episode, we discuss how he is preparing to discuss ALD inheritance with his daughter and more. Listen here: open.spotify.com/episode/12Usa8…
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Elsa is a teenager who learned she had hemophilia at age 6, after a lifetime of experiencing symptoms but being brushed off as a "carrier." When asked about learning about hemophilia at a young age, here is what she had to say. open.spotify.com/episode/38rPif…

Elsa is a teenager who learned she had hemophilia at age 6, after a lifetime of experiencing symptoms but being brushed off as a "carrier." When asked about learning about hemophilia at a young age, here is what she had to say. open.spotify.com/episode/38rPif…
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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.

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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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. open.spotify.com/episode/7tCsUA…

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. open.spotify.com/episode/7tCsUA…
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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: rememberthegirls.org/family-plannin…

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: rememberthegirls.org/family-plannin…
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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. open.spotify.com/episode/1I9X01… This month as part of our Carrier Connections series, we are featuring adrenoleukodystrophy (ALD) in partnership with ALDConnect.

Thank you, Jana, for joining us for an episode of collectively coeXisting to discuss how you are fighting symptoms of ALD. open.spotify.com/episode/1I9X01…

This month as part of our Carrier Connections series, we are featuring adrenoleukodystrophy (ALD) in partnership with <a href="/ALDConnect/">ALDConnect</a>.
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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

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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Riham is a co-founder of ALD Hope (@aldhope), 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: open.spotify.com/episode/0a6ivc…

Riham is a co-founder of ALD Hope (@aldhope), 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: open.spotify.com/episode/0a6ivc…
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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.

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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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 & co-host Taylor as they discuss the history of ALD, new developments, & symptoms in females. open.spotify.com/episode/45p3tP…

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 &amp; co-host Taylor as they discuss the history of ALD, new developments, &amp; symptoms in females. open.spotify.com/episode/45p3tP…
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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.

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.
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Exciting new research opportunity with the University of South Carolina School of Medicine! If you are a mother and have a biological daughter with whom you have had to have the "carrier talk," we want to hear from you! redcap.research.sc.edu/surveys/?s=DKR…

Exciting new research opportunity with the University of South Carolina School of Medicine! 

If you are a mother and have a biological daughter with whom you have had to have the "carrier talk," we want to hear from you! redcap.research.sc.edu/surveys/?s=DKR…
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This month we are featuring Duchenne muscular dystrophy as part of our Carrier Connections program in partnership with Parent Project Muscular Dystrophy (PPMD). This episode features Trina Stelly, a female with dystrophinopathy. open.spotify.com/episode/0ENRgO…

This month we are featuring Duchenne muscular dystrophy as part of our Carrier Connections program in partnership with <a href="/ParentProjectMD/">Parent Project Muscular Dystrophy (PPMD)</a>. This episode features Trina Stelly, a female with dystrophinopathy.

open.spotify.com/episode/0ENRgO…
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It's Friday, which means it's time to share a fact about #DuchenneMuscularDystrophy as part of our Carrier Connections program. Did you know these are the most common symptoms in female carriers of Duchenne?

It's Friday, which means it's time to share a fact about #DuchenneMuscularDystrophy as part of our Carrier Connections program. Did you know these are the most common symptoms in female carriers of Duchenne?
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The use of a donated embryo is one of the family planning options available for carriers and females impacted by X-linked disorders. Learn about the other options here: rememberthegirls.org/family-plannin…

The use of a donated embryo is one of the family planning options available for carriers and females impacted by X-linked disorders. Learn about the other options here: rememberthegirls.org/family-plannin…