LDNBSActionNetwork

The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.

[Baby's First Test @BabysFirstTest_]

As we continue to honor the past of #newbornscreening, check out this quote from @ExpectHealthOrg Navigate NBS Ambassador Twaina Williams about the changes she's seen in the #NBS system in recent years. #NBS60Years #2023NBS #raredisease #genetics

[Baby's First Test @BabysFirstTest_]

We recognize that we are all working tirelessly to improve the #newbornscreening system. However, like Ryan, we also acknowledge how far we've come & that thousands of babies with serious yet treatable conditions grow up healthy because of #NBS. #NBS60Years #2023NBS #raredisease

[Baby's First Test @BabysFirstTest_]

It takes a lot of work from dedicated families, patients, & #NBS stakeholders to get conditions added to the #RUSP. However, despite these recommendations, NBS programs differ state to state. Find out the conditions your state screens for here: https://t.co/5nnyFbY7AD #2023NBS

[Krabbe Facts @KrabbeFacts]

🔬 Wondering about "gene" and "DNA"? Let's explore!

🧬 DNA: Genetic material with instructions for life.

🧬 Gene: DNA fragment guiding vital body processes.

📚 Learn more about genes, DNA, and related terms at https://t.co/uLL8kPcMHc

#KrabbeFacts #Gene #DNA #Genetics

[Baby's First Test @BabysFirstTest_]

Today is the 1st day of #NewbornScreeningAwarenessMonth & this year marks 60 years of #NBS! We have many events and activities planned to help you celebrate this milestone while raising awareness for NBS. Click here to learn more: https://t.co/9KzzLHLZA7
#2023NBS #NBS60Years

[Krabbe Facts @KrabbeFacts]

💙 Palliative Care for Krabbe Disease 💙

💫 Specialized medical care that enhances quality of life for patients and families, regardless of disease stage

🌟 Note: Palliative care is distinct from hospice care

📚 FAQs: https://t.co/wUwYyws0T5

#KrabbeFacts #PalliativeCare

[Krabbe Facts @KrabbeFacts]

With Krabbe disease, you may see references to "CSF" on a report. Cerebral spinal fluid, or CSF, is the fluid surrounding the brain and spinal cord. Testing CSF can provide insights into brain levels.

Learn more https://t.co/uLL8kPcMHc #KrabbeFacts #CerebralSpinalFluid #CSF

[Krabbe Facts @KrabbeFacts]

🧬 Krabbe disease can appear in families without a known history. It's an autosomal recessive condition. Not all children of carriers have Krabbe disease. Undetected carriers span generations. More FAQs at https://t.co/wUwYyws0T5

#KrabbeFacts #KrabbeDisease #FamilyHistory

[Krabbe Facts @KrabbeFacts]

Introducing our partner, the Leukodystrophy Newborn Screening Action Network! They advance newborn screening for leukodystrophies, support families, and foster collaboration. Join us in making a difference! https://t.co/pxDqf8gpDp 💙 #KrabbeFacts #NewbornScreening @LDNBSAction

[Krabbe Facts @KrabbeFacts]

Wondering what to do after a positive screen for Krabbe through Newborn Screening? Contact your pediatrician as additional testing is likely needed and continue to collaborate with your medical team to explore treatment options. https://t.co/wUwYyws0T5 #KrabbeFacts #newbornscreen

[LDNBSActionNetwork @LDNBSAction]

#InternationalNeonatalScreeningDay #NewbornScreening

[Baby's First Test @BabysFirstTest_]

Today is International Neonatal Screening Day! Newborn screening has come a very long way, and there are so many incredible organizations, advocates, and families working hard to ensure that the #newbornscreening system continues to evolve for the better.

[Krabbe Facts @KrabbeFacts]

Bringing attention to Juvenile Onset Krabbe disease - affecting children aged 4-18. Symptoms vary, including motor skill loss, walking difficulties, memory problems, and peripheral neuropathy. Explore FAQs at https://t.co/jMLl8bLbRH #KrabbeFacts #JOKD #KrabbeDisease #Neurology

[Krabbe Facts @KrabbeFacts]

📣 Some treatments & trials for Krabbe disease require immediate attention. Hematopoietic stem cell transplantation (HSCT) shows promising outcomes. Consult your physician, connect with advocacy groups. Learn more at https://t.co/7Mbh5KJQLG 💻

#KrabbeDisease #KrabbeFacts

[Krabbe Facts @KrabbeFacts]

🧬 Let's explore being a carrier of Krabbe disease. Having one working and one non-working gene copy (GALC) usually doesn't cause symptoms. Carriers aren't at fault; it's common for 1 in every 125-150 people to be carriers. Knowledge is power! 💙 #KrabbeFacts #Genetics

[KrabbeConnect @KrabbeConnect]

Navigating #krabbedisease is a family matter. Click to check out some of our grandparent stories- https://t.co/VMgkEbTuCB

[Krabbe Facts @KrabbeFacts]

Too often families struggle to navigate through a diagnosis of Krabbe disease and find appropriate information to make critical life decisions for their loved ones. We'd like to help. Visit https://t.co/nWUlFJHCgn.

@HuntersHopeFDN @KrabbeConnect @LDNBSAction @ForgeBio

[National Family Center @NGEFSC]

The Family Leadership Workshop is underway, and we are excited to be with all of these fantastic #familyleaders! Over the next few days, we will engage with each other in empowering activities designed to strengthen #leadershipskills. Let’s do this! #IAmAFamilyLeader

[Expecting Health @ExpectHealthOrg]

We know that #NBS advocates want to ensure that info about dried blood spot storage and use is easily understood by families and easy to access on state NBS websites. Join us next Wednesday as we examine how we can all work together to make this possible. https://t.co/EX26m5hQPI