Galactosemia Foundation

Galactosemia Foundation Galactosemia Foundation is a national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

Galactosemia Foundation (GF) was formerly Parents of Galactosemic Children (PGC). PGC was Founded in February 1985 by a small group of mothers in New York to facilitate information sharing and networking between affected families and professionals. PGC changed their name in 2011 to the Galactosemia Foundation (GF) to reflect the fact that we have grown beyond concerned parents to include teens and adults with Galactosemia, extended families and friends, researchers, medical professionals, and others interested in Galactosemia. The objectives and functions of the Galactosemia Foundation are achieved by unpaid volunteers.

Operating as usual

We’ve had some reports of our latest newsletter going to spam folders. If you are on our distribution list and didn’t ge...
02/20/2021

We’ve had some reports of our latest newsletter going to spam folders. If you are on our distribution list and didn’t get it, check your spam! You can also read it here:https://static1.squarespace.com/static/551b5c96e4b00eb2216e7c74/t/6002f76a1e378c5ba11a30bb/1610807148335/Galactosemia+Gazette+Winter+2020_2021.pdf

Heads up!!
02/08/2021

Heads up!!

To be eligible for the virtual portion of our race (if you are outside Knoxville and want items shipped)!

Tshirts, sweatshirts, bags, jumpdrives, etc are all ready Friday for our BIG Valentine’s weekend of packing virtual bags and shipping them out! It’s how Ben and I spend the most romantic weekend of the year each year!

Right now we are shipping 250 packages- and would LOVE to see that number increase before the cut off on Wednesday!

Who’s joining last minute?! Let’s GLOW up and brighten the future for those with Galactosemia TOGETHER!

#galactosemia #galactosemiaawareness #raredisease #virtualrace #GLOWup

Galactosemia Foundation's cover photo
01/28/2021

Galactosemia Foundation's cover photo

01/23/2021

Good morning Galactosemia community! Dr. Judy and Dr. Berry have received a lot of questions about the COVID-19 vaccine. Please see their response below:

To people with galactosemia and their families:

We believe it is very important to get this message to the entire Galactosemia Family about the COVID-19 vaccine.

PLEASE GET THE VACCINE AS SOON AS YOU ARE ELIGIBLE TO RECEIVE IT!

The current situation is very dangerous. COVID-19 is a potentially lethal disease for all people, including those with galactosemia, and we know of no galactosemia-related reasons why people with galactosemia should decline to receive the COVID-19 vaccine when it is offered to them. Thank you!

Gerry and Judy

Hey all!!! Our annual GLOW for Galactosemia Race & Family Event is FAST approaching, and we would love to add some more ...
01/20/2021

Hey all!!! Our annual GLOW for Galactosemia Race & Family Event is FAST approaching, and we would love to add some more states represented to the list!! We print each state that has a virtual racer on our shirt (if they sign up by Jan 31st) so that we can celebrate our community coming together to advocate for Galactosemia, together, on rare disease day!!

The virtual race can be done individually, or you can ask family and friends to GLOW with you and build a team! Last year we had over 250 virtual participants across the nation! It’s so empowering to do this together, and know we are supporting our foundation’s outreach and research efforts!

If you want to participate but it’s a financial burden- reach out to Brittany Baker Cudzilo! We want YOU and your community to GLOW with us!

Link to find out more we have linked the sign up link + the glow for Galactosemia link in comments!

01/16/2021
static1.squarespace.com

Happy New Year from the Galactosemia Foundation! Check out the latest newsletter for a conference recap, information from Applied Therapeutics, 2022 conference info and much more!https://static1.squarespace.com/static/551b5c96e4b00eb2216e7c74/t/6002f76a1e378c5ba11a30bb/1610807148335/Galactosemia+Gazette+Winter+2020_2021.pdf

If you are on the fence, or have questions about the covid vaccine and Galactosemia, NORD has a seminar tomorrow at 2pm ...
01/14/2021

If you are on the fence, or have questions about the covid vaccine and Galactosemia, NORD has a seminar tomorrow at 2pm EST to educate anyone interested about the vaccine itself, plus how it affects someone with Rare Disease.

It looks like it will cover both vaccinations- https://rarediseases.org/covid-19-vaccines-update-fda-and-cdc-leaders-address-the-rare-disease-community-registration/

Covid 19, rare disease, and vaccination... lots of questions lately have been linked to these topics- and my best advice?

Go to the experts. (NORD- national organization for Rare Disease is doing a webinar TOMORROW at 2pm to address concerns, I’ll link in bio)

Gut check your convictions. (Each child and family have different convictions, and that’s ok. I suggest praying through them, and seeking wise counsel on how to decipher fear vs discernment)

Weigh risk vs reward. (After step 1- always educate yourself first, and don’t be afraid to read the oppositions arguments... it’s good to understand all sides)

I am excited to hear what NORD has to say... they are a great resource for any rare disease advocate, and are founded in research based educating practices.

#raredisease #nord #nationalorganizationforraredisorders #rarediseaseday #covid19 #covid19vaccine

Galactosemia Foundation's cover photo
12/01/2020

Galactosemia Foundation's cover photo

11/05/2020

Good Morning Galactosemia Community! I am sharing a note from Dr. Judy about a new research opportunity for individuals with classic galactosemia. Please contact her with questions or if you would like to participate! See details below:

Dear Wonderful Families:

Once again, I am asking for your help with our research study of classic galactosemia.

As always, we invite any and all individuals living with classic galactosemia to contact me (Judy) at [email protected] to learn more about our study so you can decide if you might want to enroll. Participation is non-invasive, and at no cost to you, and the more people participate, the more meaningful the study results will be for current and future patients with galactosemia.

Every volunteer is essential, and now we are also making a special effort to increase the diversity of our participant team to make sure our study results are relevant for the full rainbow of people with galactosemia.

We therefore especially encourage any families with Black or African American, Native American, Asian, and/or Latinx backgrounds to join us.
Thank you,
Judy

09/13/2020
08/11/2020

Hey all! Swag Bags from the conference are taking longer than expected- we will update soon on when to expect them.

07/18/2020
Go Dairy Free

Product Spotlight: GoDairyFree.org is a prominent resource for the most up-to-date information on living a dairy-free lifestyle. Among the plethora of information they house on their website, they offer great recipes, product reviews, and ingredient guides. The website was founded by Alisa Fleming, who herself suffers from a food allergy that restricts her diet. Alisa has since gone on to publish two amazing dairy-free cookbooks, and she was generous enough to donate one copy of each to this year’s conference. Please show your appreciation toward Alisa and her team by visiting their website and following their social media accounts using the links below.
Website: https://www.godairyfree.org/
Facebook: https://www.facebook.com/godairyfree/

Go Dairy Free by Alisa Fleming is the largest resource for dairy free living providing recipes, reviews, guides, travel & more.

07/18/2020
Take Two

Product Spotlight: Take Two was founded with the intent of providing more dairy-free alternatives to cow milk. In early 2019, they disrupted the industry by pioneering the first ever barley milk! Their milk comes in four delicious flavors: original, vanilla, chocolate, and chef’s blend. Be sure to show Take Two your support by visiting their website and checking out their social media accounts using the links below.
Website: https://www.taketwofoods.com/
Facebook: https://www.facebook.com/taketwofoods

Take Two is a plant-based food and beverage company on a mission to create second chances for our health and our planet.

07/18/2020

We used this video to open Day 2 of the conference.

07/17/2020
Rhythm Superfoods

Product Spotlight: Rhythm Superfoods was founded to create nutrient-dense, healthy snack alternatives. Their product lineup includes zesty nacho flavored kale chips, sea salt carrot sticks, and buffalo ranch cauliflower bites. All of their products are vegan, which also means they’re dairy-free! Shout out to Sarah and her colleagues over at Rhythm Superfoods for their donation to this year’s virtual conference. Be sure to check out their website and follow their social media accounts using the links below.
Website: https://rhythmsuperfoods.com/
Facebook: https://www.facebook.com/RhythmSuperfoodsLLC/

Rhythm Superfoods is a brand that makes innovative, plant-based nutrient-dense snacks including Cauliflower Bites, Kale Chips, Beet Chips, Carrot Sticks and Fruit Snacks.

07/17/2020
Rescue Chocolate

Product Spotlight: Rescue Chocolate was created ten years ago with the idea of combining two of everybody’s favorite activities- enjoying chocolate and helping animals. They pride themselves in highlighting important animal-related issues and advocating for change by donating 100% of their net profits to animal rescue organizations across the United States. Being that their focus is on helping animals, of course all of their chocolates are vegan! Thank you to Susan and the entire team at Rescue Chocolate for their donation to our virtual conference. Be sure to check out their website and follow their social media accounts using the links below.
Website: https://www.rescuechocolate.com/
Facebook: https://www.facebook.com/rescuechocolate/

We're the sweetest way to save a life. All profits go to animal rescue! Proud Certified B Corp. www.RescueChocolate.com
Insta/Twitter: @rescuechocolate

07/17/2020
Raw Rev

Product Spotlight: Raw Rev creates delicious, vegan protein bars with flavors that include peanut butter dark chocolate sea salt, chocolate chip cookie dough, double chocolate brownie batter, and birthday cake. The brand was started with the goal of producing high quality, healthy, affordable alternatives to the protein bars that were on the market at the time. A big thank you goes out to Dorathea and the Raw Rev team for supporting this year’s conference. Be sure to visit their website and follow their social media accounts using the links below.

Website: https://rawrev.com/
Facebook: https://www.facebook.com/rawrev/

Plant-Based Nutrition Bars
www.rawrev.com
www.twitter.com/rawrev
www.instagram.com/rawrev
www.pintrest.com/rawrevolution

07/16/2020
Katz Gluten Free

Product Spotlight: Since 2006, Katz Gluten Free has been creating food alternatives free of some of the most common food allergens- including gluten and dairy. They have become known for offering a wide variety of treats, ranging from their signature crème cakes and crème filled cupcakes, to donuts, donut holes, and muffins, to cake and bread mixes, and everything in between! Thanks to Shana and the entire team at Katz Gluten Free for their generous donation to this year’s virtual conference. Be sure to check out their website and follow their social media accounts using the links below.
Website: https://katzglutenfree.com/
Facebook: https://www.facebook.com/KatzGlutenFree/

At Katz Gluten Free, we're truly passionate about our products. We feature an extensive, ever-expanding selection of products, to meet the culinary demands of every gluten-intolerant person. Our entire staff is committed to earning your satisfaction!

07/16/2020
BRAMI Snacks

Product Spotlight: BRAMI Snacks offers some of the best-tasting and healthy hunger-fighting snacks on the market. Their signature lupini beans come marinated in four delicious flavors: sea salt & vinegar, chili & lime, garlic & rosemary, and hot chili peppers. All of their products, which pack an extremely high protein punch, are vegan. This is BRAMI Snack’s second time donating to the Galactosemia Foundation Conference. Thank you very much to Jessica and the entire BRAMI Snacks team for their continued support and generosity. Show them love by visiting their website and following their social media accounts using the links below.

Website: https://bramisnacks.com/
Facebook: https://www.facebook.com/bramisnacks

Known as the "miracle bean", lupini once fueled roman warriors and has been enjoyed in the Mediterranean ever since. Lightly pickled in small batches, BRAMI is a deliciously addicting plant protein snack that fills you up without compromising your diet.

The next couple days we'll be highlighting some of the wonderful companies who donated dairy free items for the conferen...
07/15/2020
2020 Galactosemia Foundation Virtual Conference

The next couple days we'll be highlighting some of the wonderful companies who donated dairy free items for the conference this year! Let's show them some love by checking out their websites and purchasing their products! Speaking of the conference...have you registered yet? You must register by tomorrow night to get the free swag package! The conference is THIS WEEKEND - Friday-Sunday! Register today! https://galactosemia.hubilo.com/

2020 Galactosemia Foundation Conference

Our conferences have a tradition that is near and dear to us that we couldn’t help but include virtually- our TALENT SHO...
07/14/2020

Our conferences have a tradition that is near and dear to us that we couldn’t help but include virtually- our TALENT SHOW!

We love getting to see our community showcase their passions and we’ve got it setup to enjoy as family fun for Saturday night at our conference!

In order to do this, Nicole and I will be accepting videos through Friday morning. If you can upload them to google drive and share with us, that would be so helpful- [email protected]!

We can’t wait to see what you all submit 🎉 and look forward to sharing in this family fun all together!

07/14/2020

Really quick- SWAG BAG update + once registered, how to get most up to date info on virtual conference 🎉

07/06/2020

At every conference the names of our Galactosemia angels, no longer with us, are announced so we able to remember them. If you know of a name that needs to be added to the list, please PM the name, date of birth and date of heavenly birth and we will get them on the list.

CONFERENCE 2020 SWAG preview 🎉We are having technical difficulty with the ordering of these- but we are working on it an...
07/02/2020

CONFERENCE 2020 SWAG preview 🎉

We are having technical difficulty with the ordering of these- but we are working on it and hope to have an answer ASAP!

While we are waiting, we wanted you to see what we’ve been working on!

Each swag bag will come with a tshirt of your specified size, a mask, flash drive, diet card, stickers, AND an added swag product that’s TBD!

Each bag is $35 and will be shipped after conference!

07/01/2020

Who is ready to talk 2020 virtual conference??! + all details on registration!

Galactosemia Foundation
06/26/2020

Galactosemia Foundation

Galactosemia Foundation
06/18/2020

Galactosemia Foundation

Galactosemia Foundation
06/17/2020

Galactosemia Foundation

SURPRISE 🎉

We are excited to share a little about what we’ve been working on behind the scenes! It’s been a tough year, and canceling our 2020 Charlotte, NC Conference has added to the list of things we couldn’t foresee happening. We as a foundation want to be with you, and bring our doctors, clinicians, dieticians, etc in with us to share new research, meet families, create bonds with one another, and allow our children to enjoy time together!

SAVE THE DATES and SPREAD THE WORD- The Galactosemia Conference for 2020 is going virtual! Join us July 17-19 as we take our 2020 agenda to the internet and enjoy one another from the comfort of our own homes! We will have breakout and networking sessions for children and adults, as well as our regularly planned general sessions!

Pricing will be $50 for adults, $50 for professionals, and $5 for kids. Kid tickets will only be available if an adult ticket is purchased in the same household and there will be access differences for each to ticket type (to keep kids safe). Each ticket will have a profile which will allow other attendees to see your photo, name, and anything you want to share about yourself.

As we finalize our virtual agenda we will release more information! What a great opportunity for us to invite all who haven’t made it to a conference yet to connect and hear what has been happening in our community and in the newest research!

Thank you to Applied Therapeutics for sponsoring this event!

SURPRISE 🎉We are excited to share a little about what we’ve been working on behind the scenes!  It’s been a tough year, ...
06/17/2020

SURPRISE 🎉

We are excited to share a little about what we’ve been working on behind the scenes! It’s been a tough year, and canceling our 2020 Charlotte, NC Conference has added to the list of things we couldn’t foresee happening. We as a foundation want to be with you, and bring our doctors, clinicians, dieticians, etc in with us to share new research, meet families, create bonds with one another, and allow our children to enjoy time together!

SAVE THE DATES and SPREAD THE WORD- The Galactosemia Conference for 2020 is going virtual! Join us July 17-19 as we take our 2020 agenda to the internet and enjoy one another from the comfort of our own homes! We will have breakout and networking sessions for children and adults, as well as our regularly planned general sessions!

Pricing will be $50 for adults, $50 for professionals, and $5 for kids. Kid tickets will only be available if an adult ticket is purchased in the same household and there will be access differences for each to ticket type (to keep kids safe). Each ticket will have a profile which will allow other attendees to see your photo, name, and anything you want to share about yourself.

As we finalize our virtual agenda we will release more information! What a great opportunity for us to invite all who haven’t made it to a conference yet to connect and hear what has been happening in our community and in the newest research!

Thank you to Applied Therapeutics for sponsoring this event!

Address

350 Northern Blvd STE 324 - 1079
Albany, NY
12204

General information

If you would like to receive e-mails from PGC concerning such things as food item recalls, items of interest regarding galactosemia, and upcoming PGC events, please forward your name and email address to [email protected] Please put "GF Mailing List Addition" in the subject line of the email.

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Comments

Hydrolyzed collagen peptides? Organ meats safe?
I had my miracle baby yesterday at 5:02pm! Our mystery gender turned out to be a boy! I just wanted to introduce Lucas Kent!
In need of a endocronologist that has experience with Galactosemia. Thank you in advance.
Thank you Galactosemia foundation board members for your partnership with Applied Therapeutics to host the virtual conference. Your hard work and dedication to the Galactosemia Community shined through. 💚
Does anyone know the status of the conference? If we are going to have it or not?
Just posting a nice success story in the midst of everything in the world! I spontaneously ovulated and am 3 months pregnant! I went off the Xulane patch in July of last year and took progesterone every other month with continous Estradoil. My cycle came naturally in November and December and we found out in early February! Hoping to spread some joy 😃 due date is October 17th
Any news on the Conference? I'm way too excited for the registration to open!!!
Is registration open yet for the 2020 conference? Can't wait to sign up!
Looking for a rock band to headline a benefit concert benefitting NORD and the Galactosemia Foundation on Rare Disease Day 2020. We have the venue booked - The North Door in Austin TX - on Feb 29th 2020. We need a band who can draw 200-300 people on name recognition in downtown Austin on a Saturday night. Please message me if interested, or if you know someone who would play - and if you’re in Central Texas then mark your calendar for the 29th!
Is Ghee safe? I'm starting the paleo dies which doesnt include any dairy, yet ghee is paleo approved
Hello. What milk can we use for a 3 years old kid in ITALIA ?
Any spontaneous pregnancies? Just wondering