Birds for Sofia, Inc.

Birds for Sofia, Inc. We assist children with rare genetic diseases without access to required healthcare & rehabilitation.

June is Dravet Syndrome Awareness Month, and we’re raising awareness for the thousands of children globally diagnosed wi...
06/19/2026

June is Dravet Syndrome Awareness Month, and we’re raising awareness for the thousands of children globally diagnosed with this rare genetic condition 🦠

is a complex form of myoclonic epilepsy caused by a mutation in the SCN1A gene. 🧬 The disease profoundly affects body’s ability to regulate temperature and is characterized by frequent, prolonged, heat-induced seizures. It also brings delays in physical and cognitive development, speech impairment, hyperactivity, sleep disturbances, and motor challenges 🆘

Seizures can be triggered by things most of us consider normal or even joyful: a warm bath, a slight fever, a viral illness, laughter, excitement, fear, bright lights, certain patterns or fabrics, lack of sleep, stomach discomfort, weather changes, or large crowds. Even strong positive emotions increase the risk of an attack ❤️‍🩹

Because of this, families are often forced to limit the activities, emotions, and environments that other children freely explore 😭

Together with our two Dravet families, we searched for safe and gentle ways to support their development. Through the Birds for Sofia Medical Support Program, we covered:

✔️ massage, osteopathic procedures, taping, and specialized sensory therapy for Mia;

✔️ a Dräger Comfort Vest—a specialized cooling vest that helps maintain a normal body temperature, for Yarina

Our Medical Support Program continues to unite global efforts to deliver medications, equipment, and medical nutrition to the most vulnerable children with rare diseases in Ukraine

By raising awareness about Dravet syndrome, you help:

✅ encourage early genetic testing and precise intervention

✅ promote equitable, global access to next-generation therapies

✅ support ongoing research for targeted genetic cures

Learn more about our mission and consider joining Birds for Sofia Foundation:

🧬 https://www.birdsforsofia.org/donations/save-ukrainian-kids/
(link is also in our bio)

Thank you!
🕊️♥️

This June, we’re raising awareness for the tens of thousands of people globally diagnosed with Dravet syndrome — a lifel...
06/17/2026

This June, we’re raising awareness for the tens of thousands of people globally diagnosed with Dravet syndrome — a lifelong genetic epilepsy that begins in the very first year of life 🧬

is a rare disease that causes severe, prolonged, and life-threatening seizures, often triggered by the simplest things: a warm bath, a minor fever, a sudden change in ambient temperature, or even a moment of pure childhood excitement — all due to mutation in a gene controlling sodium channels function 🧠

While symptoms typically appear around 6 months of age, diagnostic gaps remain a major hurdle worldwide. This leaves many kids without an accurate diagnosis while families face terrifying, unexplained medical crises for months or even years.

Today’s management includes:

✔️ daily multi-drug anti-seizure regimens
✔️ specialized ketogenic diets
✔️ vagus nerve stimulation
✔️ game-changing drugs like Fenfluramine (Fintepla) and Cannabidiol (Epidiolex) that target faulty pathways

In the upcoming years, the landscape of care is moving toward solutions like:

🧬 precision genetic therapies, including antisense oligonucleotides (ASOs)
🧬 CRISPR-based gene regulation
🧬 advanced neuro-monitoring wearables and AI-driven predictive systems

These emerging innovations aim to protect children from Sudden Unexpected Death in Epilepsy (SUDEP) and repair the condition at its genetic root.

Yet, today, there is still no cure ⛔️

🆘 Moreover, advanced orphan drugs remain a distant luxury in low- and middle-income countries, where children are left vulnerable to preventable, devastating neurological regression.

Since 2022, BfS has been delivering vital aid to children with Dravet syndrome in Ukraine🇺🇦 to help bridge this gap — and we call on you to join our mission 🕊️

By raising awareness about Dravet syndrome, you help:

✅ encourage early genetic testing and intervention

✅ promote equitable access to next-generation therapies

✅ support ongoing research for targeted genetic cures

Together, we can bring predictability, safety, and stability to the lives of those affected by Dravet syndrome worldwide ♥️

🧬 birdsforsofia.org
(link is in our bio)

Thank you!
🕊

True expertise isn’t just about professional development—sometimes, it is the exact boundary between a child staying tra...
06/15/2026

True expertise isn’t just about professional development—sometimes, it is the exact boundary between a child staying trapped in a hospital ward or finally going home to their family 🙏

Vasyl lives with Ullrich congenital muscular dystrophy🧬. Tracheostomized and confined to a hospital bed, he spent months waiting for a lifeline 😭

When his family reached out to us, we faced a stark reality: finding and funding the right respiratory support for his specific diagnosis is incredibly difficult. A new, compatible ventilator would have cost our foundation upwards of €10,000 just to start—a massive financial hurdle and a devastating delay for a child who didn’t have time to spare 🆘

But the solution wasn’t a new fundraising campaign. It was specialized knowledge.

The hospital ЗУСДМЦ #особливадитячалікарня already had a Resmed Astral ventilator Resmed sitting in storage, however, the medical team yet hadn’t received training required to operate it for a case this complex.

This is exactly where our international workshop in Würzburg Universitätsklinikum Würzburg | UKW closed the gap. The specialized insights Marta Sheremet Marta Sheremet and her medical team brought back from global experts on respiratory therapy and ventilation equipment Lindsey Reigle BÖRGEL GmbH provided the precise breakthrough Vasyl needed. Upon returning to Ukraine, they knew exactly how to configure the Astral device, tailor it to Vasyl’s highly specific needs, and safely adapt the donated equipment already on hand 💫🙌

More importantly, the team thoroughly trained Vasyl’s parents, giving them the skills and confidence to manage his care safely at home. Today, Vasyl is finally back where he belongs, surrounded by his family and breathing safely 🏠

By unlocking existing resources through education, we also freed up €10,000 —funds that can now be redirected to protect other vulnerable children 🇺🇦🇺🇸

Investing in knowledge turned out to be a direct line to saving lives, and there are many more to come thanks to your kind support🕊️

Learn more about BfS educational mission in Ukraine on the official website:

🧬 https://www.birdsforsofia.org/donations/wurzburg-workshop-2026/

Thank you! ♥️

Amplifying patient voices is at the heart of everything we do, which is why we are incredibly proud to highlight this br...
06/12/2026

Amplifying patient voices is at the heart of everything we do, which is why we are incredibly proud to highlight this brilliant initiative from our colleagues at SMA Europe SMA Europe - SMA Patient Advocate Training.

SMA Patient Advocate Training is a specialized free program designed to equip advocates with the essential knowledge and skills needed to powerfully represent the SMA community, when collaborating with key stakeholders, including pharmaceutical industry leaders, clinicians, researchers, and government policymakers 🔈

🎓 The training is structured into 4 self-paced e-learning units and 1 module of in-person workshops:

✔️ Overview of SMA data
✔️ Core patient advocacy principles
✔️ Medicines’ lifecycle
✔️ Healthcare systems and regulatory access pathways
✔️ Key challenges and future goals

You should apply if you are:

💫 An individual living with SMA who wants to turn your lived experience into professional advocacy expertise
💫 A parent, family member, or primary caregiver of someone with SMA who is naturally driven to make a systemic difference for the community Віка_Влад, СМА Sasha Настя:) Марія Михайловська | СМА1|Марія Михайловська | СМА1| 15.06.2021rior scientific background or are already volunteering with a local foundation, this training is built to take your personal determination and give it structured, professional framework needed to change policies and save lives 🙌

🇺🇸🇪🇺🇩🇪🇵🇱🇺🇦 Candidates from any countries are welcome

✅ Upon completing all modules, trainees will receive the official SMA Patient Advocate Training Certificate issued by SMA Europe as recognition of their expertise.

How to apply:

📝 Download the application form from SMA Europe, complete it thoroughly, and email it directly to SMAcademy using the subject line: Application to the SMA Patient Advocates Training [First Name] [Last Name]

📅 Deadline for applications:
June 30, 2026

📅 Admission decisions:
July 20, 2026

Let’s strengthen our collective voice and ensure our community continues to drive the future of SMA advocacy! 🕊️

Learn more at SMA EuropeSMA Europe

Varvara Mayer is the only girl in Ukraine diagnosed with a severe genetic defect of SLC6A1, associated with Epileptic E...
06/08/2026

Varvara Mayer is the only girl in Ukraine diagnosed with a severe genetic defect of SLC6A1, associated with Epileptic Encephalopathy 🧬

Due to disrupted biochemical processes in her brain and daily epileptic seizures, her neural connections were rapidly deteriorating—until the nitrogen-binding medication Ravicti® was approved for children with SLC6A1. In the last 2 years that we helped cover the treatment via our Unbiased Inheritable Disease Program, epileptic seizures have disappeared, and fine motor skills have significantly improved 🙌

Now, history is being written for SLC6A1 once again, since the FDA has officially authorized the first administration of gene replacement therapy. The path is being paved by a brave 8-year-old boy Maxwell, who recently became the first patient to receive the therapy at Nationwide Children’s Hospital in Ohio. The updates are encouraging: Maxwell has successfully received his first dose, and the initial clinical results are highly optimistic 💪

This success sets the stage for Varia. Scientists are now using Maxwell’s data to fine-tune the dosage, ensuring the highest level of safety and efficacy before submitting for the final FDA approval that will expand access to more children.

As a nonprofit focused on kids with rare diseases, is watching this timeline with bated breath and are eager to join the advocacy led by foundation. We have confirmed our commitment to support Varvara as soon as the final regulatory decision is made.

Meanwhile, to ensure they are completely ready the moment this breakthrough therapy becomes accessible on the market, Varia’s parents are proactively running their own fundraiser on official page 🙏 It is currently stuck at 32%.

The incredible news is that tomorrow, your impact on her future can go twice as far for the next 24 hours, a generous donor will be matching all donations to Varvara, doubling every dollar given to support her journey! 🕊️

Share Varia’s story and stay tuned to learn more about the next era of gene therapy for ultra-rare diseases.

🧬 www.birdsforsofia.org/
(link is also in our bio)

Thank you ♥️

06/03/2026

rare parent /rɛər ˈpɛərənt/ noun

1. а mother, father, or guardian raising a child with a rare disease, complex medical condition, or unique neurodivergence,
2. а master of unexpected trades: part-time nurse, full-time advocate, insurance negotiator, medical coordinator, therapy cheerleader, and keeper of hope,
3. а fierce protector who celebrates milestones that others might overlook, finding profound joy in the smallest victories,

—all before breakfast 🙌

To the world, you are a caregiver. To your child, you are the entire world—the steady anchor in a stormy sea, the loudest voice cheering them on, and the architect of their healing.

To every rare parent reading this, holding it all together today: we see your quiet strength, your sleepless nights, your fierce devotion, and the deep love that drives it all. You are doing an incredible job, and you are never alone on this journey 🕊️♥️

👇 Tag a rare parent who inspires you today to remind them how heroic they are.

We’ll go first
.tilha

When your child has Spinal Muscular Atrophy, a simple cold can quickly become a crisis 🆘 For Khrystyna’s mother, every i...
06/02/2026

When your child has Spinal Muscular Atrophy, a simple cold can quickly become a crisis 🆘 For Khrystyna’s mother, every illness came with a heavy weight of worry. But this year, everything changed 🕊️

When 7-year-old Khrystyna fell ill recently, she was finally introduced to a life-changing piece of medical equipment: the Philips Respironics CoughAssist, provided through the Birds for Sofia foundation thanks to our dedicated partners at Börgel .

Moreover, Khrystyna’s family found a true circle of support at the Clinical Center of Children’s Healthcare in Lviv . Her attending physician, Dr. Marta Sheremet , closely monitored the process and offered steady encouragement, while respiratory therapists guided the family through every step, carefully adjusting the machine’s parameters to fit Khrystyna’s exact needs and teaching her mom how to use it with confidence.

Today, the cough assist is at home with Khrystyna 🙏 It has become an essential part of her daily routine, a vital lifeline whenever she gets sick, and a hope to spend more days at home than at the hospital. “I don’t know how we survived seven years without it,” Khrystyna’s mom admits.

We are incredibly grateful to for providing this essential equipment, to the wonderful medical team in Lviv, Ukraine🇺🇦 , and to everyone in our community who makes stories like Khrystyna’s possible 🕊️

Thank you for helping us bring relief, safety, and hope into rare homes ♥️

🧬 https://birdsforsofia.org
(link in bio)

 🕊️

As Cystic Fibrosis Awareness Month comes to a close, we need to talk about the single most critical baseline: has no c...
05/31/2026

As Cystic Fibrosis Awareness Month comes to a close, we need to talk about the single most critical baseline: has no cure ⛔️

Behind every headline about new medical miracles, there is a physical reality that never takes a day off for thousands of children:

💨 Hours of daily physiotherapy to break up heavy mucus

💊 Taking dozens of enzyme pills with every single meal just to digest food

🔌 Relying on heavy, mechanical hardware like cough assist machines just to take a clear breath

Science has made historic leaps 💫
Next-generation modulators are rewriting futures for many, and genetic trials give us hope for the rest. But until those solutions become accessible, management of symptoms is the only option patients have.

So even though awareness month ends today, the fight to breathe does not 🕊️

While the world’s brightest minds work toward that permanent cure, the BfS team stays on the ground to deliver:

🕊️ vital enzymes and targeted antibiotics
🕊️ critical airway equipment
🕊️ respiratory training for local medical teams in Ukraine

Thank you to everyone who shared our posts, learned the facts, and donated this month 🙌

Together, we can make sure no child fights CF alone ♥️

🧬 https://birdsforsofia.org
(link in bio)

Thank you 
♥️🕊️

05/26/2026

This May, we’re raising awareness for the 110,000+ people globally diagnosed with cystic fibrosis — and the thousands more still waiting for an answer 🧬

CF is a rare genetic disease causes thick mucus to build up in the lungs and digestive system, leading to chronic infections and malnutrition 🦠

🫁 While 75% are diagnosed by age 2, diagnostic gaps remain a major hurdle in many parts of the world, with up to 30% of patients living with an undetected CFTR gene mutation.

🆘 Only 12% of diagnosed patients receive advanced triple-combination therapies globally, while many patients in low- and middle-income countries remain never diagnosed or treated.

is on the ground delivering vital aid to children with cystic fibrosis in Ukraine 🇺🇦 to help bridge this massive gap.

We provide:

🕊️ vital enzymes and targeted antibiotics
🕊️ airway equipment like inhalers and cough assists in partnership with
🕊️ respiratory training for local medical teams .nicholas.hospital

— and we call on you to join our mission 🤝

By raising awareness about CF, you help:

✅ encourage early diagnosis and intervention
✅ promote equitable access to treatments
✅ support ongoing research for a cure

Together, we can make a difference in the lives of those affected by cystic fibrosis ♥️

🧬 https://birdsforsofia.org
(link is also in our bio)

Thank you!
🕊

What’s the difference between a child with cystic fibrosis living a full life into their 60s, and a child fighting to ...
05/25/2026

What’s the difference between a child with cystic fibrosis living a full life into their 60s, and a child fighting to survive past their teens?

Often, it isn’t science, but a ZIP code 🌍💔

Historically, CF treatments were reactive. High-frequency vests, hours of daily nebulizers, and massive doses of antibiotics were designed to clean up sticky mucus after it had flooded and damaged the lungs 🫁

Orkambi, Symdeko, Trikafta and newly available, once-daily Alyftrek by are CF Transmembrane Conductance Regulator modulators that changed the paradigm by being proactive. These combination therapies go directly inside the cell to repair the faulty protein that causes mucus 🦠

1️⃣ Corrector components help the protein fold correctly so it can reach the cell membrane

2️⃣ Potentiator component keep the cell’s gates open

3️⃣ Chloride and fluids finally flow naturally, thinning mucus so the body can clear it out, stopping infections and tissue scarring before they start

But a miracle is only a miracle if you can access it:

❌ life-altering therapies cost up to $300,000 per patient annually and are available for only 12% of patients worldwide

While families in the US and the EU receive these medications through standard insurance, children in low- and middle-income countries are left behind.

In Ukraine🇺🇦, CFTR modulators are not officially registered. There are pioneering local initiatives, like a pilot access program in Lviv Clinical Center of Children’s Healthcare and select charity partnerships securing treatment for a small number of patients, but wide state procurement does not exist. Facing astronomical costs, families search for medicine abroad or leave the country 🆘

While the world works to break down these economic walls, delivers:

🕊️ vital enzymes and targeted antibiotics
🕊️ airway equipment like inhalers and cough assists
🕊️ respiratory training for local medical teams

This Cystic Fibrosis Awareness Month, help us fight the gap and bring health equity to kids who need it most 🕊️

🔈 Join our mission today

🧬 birdsforsofia.org
(link in bio)

Thank you
♥️🕊️

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299 S. Main Street, Suite 2450
Salt Lake City, UT
84111

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