collectively coeXisting

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring ornithine transcarbamylase (OTC) deficiency. OTC deficiency is an X-linked genetic disorder marked by a complete or partial lack of the enzyme ornithine transcarbamylase. This results i...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring ornithine transcarbamylase (OTC) deficiency. OTC deficiency is an X-linked genetic disorder marked by a complete or partial lack of the enzyme ornithine transcarbamylase. This results i...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring ornithine transcarbamylase (OTC) deficiency. OTC deficiency is an X-linked genetic disorder marked by a complete or partial lack of the enzyme ornithine transcarbamylase. This results i...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked genetic disorder caused by a mutation in the gene GLA that impairs the efficient breakdown of fatty acids, or lipids in the cell. This mu...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked genetic disorder caused by a mutation in the gene GLA that impairs the efficient breakdown of fatty acids, or lipids in the cell. This mu...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked genetic disorder caused by a mutation in the gene GLA that impairs the efficient breakdown of fatty acids, or lipids in the cell. This mu...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Pelizaeus-Merzbacher disease. Pelizaeus-Merzbacher disease (PMD) is a rare X-linked condition affecting the brain and spinal cord caused by mutations on the PLP1 gene. It is a type of l...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Pelizaeus-Merzbacher disease. Pelizaeus-Merzbacher disease (PMD) is a rare X-linked condition affecting the brain and spinal cord caused by mutations on the PLP1 gene. It is a type of l...

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Pelizaeus-Merzbacher disease. Pelizaeus-Merzbacher disease (PMD) is a rare X-linked condition affecting the brain and spinal cord caused by mutations on the PLP1 gene. It is a type of l...

Allow us to re-introduce ourselves...

Jaclynn Brown is a 36 years old woman from Manitoba, Canada where she and her partner run a busy Autobody Shop. She found out she was a carrier and patient with X-Linked lymphoproliferative syndrome (XLP) following her brother's diagnosis in 2019. Attempting the IVF route proved to be overwhelming and costly after much testing and finding out she has only one ovary. From there, Jaclynn and her par...

Sarah K. is a 40 year old photographer and barre instructor who is from Minnesota. For as long as she can remember she knew she was a carrier of ALD. When her and her husband were ready to have children, they looked seriously at their options and came to the tough and risky decision to start by trying to conceive naturally. After a few months, they found out that she was pregnant with a boy and ar...

Nicole Hunter is a 30 year old woman from Virginia who is affected with Duchenne Muscular Dystrophy (DMD). She first became pregnant September 2020 and with no known family history of genetic diseases, it was a shock when it was discovered she was a carrier for DMD at routine genetic testing done at 12 weeks prenatally. At the same time, she found out she was also having a baby boy. Nicole proceed...

Kristy McCracken is an advocate and patient of an x-linked condition in the Urea Cycle Disorder family. Her official diagnosis is Ornithine Transcarbamylase deficiency, commonly referred to as OTC.  Kristy is a member of many patient organizations for UCD and rare diseases and her biggest passion is being a mentor for those newly diagnosed or going through their own journey. Kristy terminated a pr...

Jessica Stephens is a 30 year old mum from Middlesbrough, United Kingdom (UK) who is affected with Ornithine Transcarbalmalyse, shortened as OTC Deficiency. Jessica lost her second baby, August, tragically to OTC deficiency when he was 3 days old in September 2020. It took around 9 months until she was diagnosed as a “carrier” of OTC. Jessica knew she still wanted to continue her family but with a...

Emma Bliss learned of her X-Linked Myotubular Myopathy carrier status the way many x-linked carriers do - by giving birth to a child with the condition after a healthy pregnancy and no family history. Caleb, Emma's second child, lived for 5 months in the NICU and was held and loved by his family the entire time. Emma is a mother of three and resides in New Hampshire with her husband, two kids and...

Sarah Myatt is a single mom of 2, elementary music teacher, and classical singer from Nova Scotia, Canada. She found out she had Adrenoleukodystrophy in 2007 and inherited the variant from her mother, who had early onset disabling-symptoms. When wanting to start her family in 2008, Sarah decided she would go through genetic testing. In 2009 at 14 weeks, Sarah learned that her child was affected wi...

Brittney is a 37 year old woman from Baltimore, Maryland. Her story goes back to November 2018 when she found out at 10 weeks into her pregnancy that she was a carrier for Fragile X. When she received this call, she had no idea what that was or what that would mean for her pregnancy. After meeting with a Genetic Counselor, she learned she was a mosaic - full mutation carrier and because her repeat...

Introducing "Taboo Talks" with Remember The Girls!  For the first section of our series, we will discuss TFMR featuring personal memoirs from x-linked carriers who have faced these difficult decisions.  As a disclaimer, this podcast series features sensitive topics. Understand that the opinions and topics do not express or represent the organizations personal feelings on any matter but a...

Interview with Lori Long and Shari Luckey, two female patients with {X-linked} Hemophilia B. 

Interview with Katie Mears and Sonji Wilkes, two female patients with {X-linked} Hemophilia A. 

Remember The Girls collaboration with Hemophilia Federation of America. 

Interview with Megan Dunleavy, a female patient with {X-linked} Alport Syndrome and current medical school student with a special interest in genetics and nephrology.

Interview with Janine Reed, a female patient with {X-linked} Alport Syndrome.

Interview with Afton DeLucca, a female patient with {X-linked} Alport Syndrome.