Galactosemia Together

Galactosemia Together

This group was created for and is shaped by YOU! Let's see what we can accomplish as a community! We observe Facebook’s posting guidelines and terms of use.

We're a group of patients, caregivers, parents, metabolic dietitians, and clinicians dedicated to providing trustworthy information, vetted by experts. Community Guidelines:

Welcome to the Galactosemia Together page, sponsored by Applied Therapeutics. We would ask that you observe them, in addition to the following terms when commenting on our page. We have a legal responsibilit

10/10/2024

Today's Word: Genetic Mutation. Inherited mutations in the GALT or GALK genes are responsible for causing Galactosemia. Visit https://bit.ly/36QmTQ0 to see the ways these mutations cause problems for people with Galactosemia.

08/10/2024

Preparing your child for any new stage of life, like a new school year or extracurricular activity, can sometimes be overwhelming. The Galactosemia Diet Instructions guide can help make the transition a little smoother by providing teachers and other caregivers on overview of how they can support your child. Find this and other helpful resources at https://bit.ly/3tEDCS8

03/10/2024

Galactosemia shouldn't define your child. Instead, it can be a part of who they are. They can become an advocate for themselves and the Galactosemia community. Encourage your child to speak to their friends and others about how they live with Galactosemia. Education is powerful. https://bit.ly/3ueeGke

26/09/2024

School is back in session! How did you prepare for your child to start this school year? Share your tips for new school-year transitions in the comments.

24/09/2024

Receiving a Classic Galactosemia diagnosis for your newborn can be upsetting and disorienting. Knowing what to expect can help. Learn more about the path forward at https://www.galactosemia.com/living-with-galactosemia/newborns-babies/

17/09/2024

The Decision to stop breastfeeding is an emotional one, but necessary in order to keep your newborn safe. Your dietitian can guide you through formulas that are Galactosemia friendly. Learn more about different types of formula at https://www.galactosemia.com/living-with-galactosemia/newborns-babies/

12/09/2024

Korissa is a mother to a teenage son with Galactosemia, and is an avid supporter of newborn screening. Korissa experienced the importance of newborn screening firsthand when urged by a nurse to conduct the test on her healthy-looking newborn, resulting in her son's Galactosemia diagnosis. Newborn screening saved his life and prompted Korissa to learn about the condition and its dietary restrictions. https://www.galactosemia.com/living-with-galactosemia/newborns-babies/

10/09/2024

Your newborn will need a special diet after being diagnosed with Galactosemia, including a soy-based or elemental formula. Learn more about a Galactosemia-friendly diet for newborns at https://www.galactosemia.com/living-with-galactosemia/newborns-babies/
Always check with your physician before making any changes to your child's diet.

05/09/2024

Is your child about to start their first year of school? Maybe moving up a grade with a new teacher? Let us know about any tips you have for talking about Galactosemia with new teachers and see what works for others. https://www.galactosemia.com/galactosemia-patient-resources/

03/09/2024

September is Newborn Screening Awareness Month!
Newborn screening is the critical first step in the diagnosis of Galactosemia and can help expedite care to ensure the earliest intervention. Learn more about the importance of newborn screening: https://www.galactosemia.com/living-with-galactosemia/newborns-babies/

15/07/2024

Galactosemia is a rare metabolic disorder, that if not caught in the first two weeks of life has a high fatality rate. Luckily, with medical advancement and the Newborn Screen, most babies with Galactosemia are caught early enough today to save their lives. However, thats not always the case and severe symptoms can happen earlier than diagnosis that cause a child to lose their life.

At our in person conferences we want to take a moment to remember the lives lost too early to Galactosemia. If you have a child, or know of someone who does, that we can add to our list to remember, please reach out of [email protected].

10/07/2024

We are only nine days away from conference! If you want to register, there is still time! If you've registered and are wondering what to expect, check out our website with all the information you need. Are you coming? What are you looking forward to most? Let us know in the comments! https://galactosemia.org/2024/06/06/2024-galactosemia-conference-details/

24/06/2024

Today's Word: Neurologist. An expert in the nervous system that can diagnose, treat, and manage issues with motor skills, tremors, and seizures. Visit https://bit.ly/3dsyBn0 to meet the rest of your healthcare team.

Photos from Adventures of Galacto Girls's post 24/06/2024
21/06/2024

Now that you're a pro at creating a Galactosemia-friendly diet, it might be time to give your teen some control over their meal planning. See how you can empower them to take their diet into their own hands at https://bit.ly/3qy6AzN.

18/06/2024

What early childhood services were most valuable to you
and your family? How did you connect with them? Share
in the comments and learn from others.

14/06/2024

To help your teen with Galactosemia learn to begin taking care of themselves, consider letting them have more control in managing their diet. Help them get used to reading food labels with these tips: https://bit.ly/39JBvBt.​

05/06/2024

Share some of the misunderstood information or myths you've encountered on your Galactosemia journey. Together, we can work toward addressing them.

29/05/2024

Today's Word: GALT. An enzyme in the body that processes galactose-1-phosphate (GAL-1p) into glucose-1-phosphate, which is eventually used for energy. Visit https://bit.ly/2USlDsg to see what happens when this enzyme is missing.

28/05/2024

Registration is available, with early bird pricing extended until May 30. Check out our latest newsletter for information and links to register, book your hotel, sign up for the talent show and more. We are still experiencing some random technical difficulties. If you have any problems registering please email [email protected]://galactosemia.org/wp-content/uploads/2024/05/Galactosemia-Gazette-Conference-Registration-Open-Summer-2024_FINAL.pdf

24/05/2024

The decision to stop breastfeeding is an emotional one, but necessary in order to keep your newborn safe. Your dietitian can guide you through formulas that are Galactosemia friendly. Learn more about the different types of formula at https://bit.ly/3CVHL5C.​

22/05/2024

2024 Paul P Conference Scholarship Application - Galactosemia Foundation Our foundation advocates for people with Galactosemia and their families. We connect families and support networking efforts between clinicians and researchers.

20/05/2024

Kimberley has been living with her Galactosemia and recommends "Take it day by day. You don't need to be an expert now."

Videos (show all)

Today's Word: Genetic Mutation. Inherited mutations in the GALT or GALK genes are responsible for causing Galactosemia. ...
Preparing your child for any new stage of life, like a new school year or extracurricular activity, can sometimes be ove...
Galactosemia shouldn't define your child. Instead, it can be a part of who they are. They can become an advocate for the...
School is back in session! How did you prepare for your child to start this school year? Share your tips for new school-...
Receiving a Classic Galactosemia diagnosis for your newborn can be upsetting and disorienting. Knowing what to expect ca...
The Decision to stop breastfeeding is an emotional one, but necessary in order to keep your newborn safe. Your dietitian...
Korissa is a mother to a teenage son with Galactosemia, and is an avid supporter of newborn screening. Korissa experienc...
Your newborn will need a special diet after being diagnosed with Galactosemia, including a soy-based or elemental formul...
Is your child about to start their first year of school? Maybe moving up a grade with a new teacher? Let us know about a...
Today's Word: Neurologist. An expert in the nervous system that can diagnose, treat, and manage issues with motor skills...
Now that you're a pro at creating a Galactosemia-friendly diet, it might be time to give your teen some control over the...
What early childhood services were most valuable to youand your family? How did you connect with them? Sharein the comme...