Noonan Syndrome Ireland

23/06/2025

Ellie (ptpn11) graduated primary school today. Congratulations 🥳

08/06/2025

Goodbye and Thank You 💚

Dear All,

It is hard to find the right words as I say goodbye to this wonderful group and to Ireland, which has become so close to my heart. I started this group back in 2017, and with the amazing help of Niamh, Helen, and Nuala, we watched it grow into something truly special. I am incredibly proud of what we have built together – a place of support, connection, and community.

Now, as my family and I have moved back to our home country, Hungary, it is time for me to step down as admin. I am so happy to be leaving the group in the capable and caring hands of Niamh, Helen, and Nuala. I know it will continue to thrive with their support.

Although it is difficult to say goodbye, I hope that one day – maybe at a family day – our paths will cross again. I wish you all the very best, good health, and happiness in the future.

Thank you for being part of this journey with me.💚💚💚💚

Martina Muller

20/04/2025

Noonan Syndrome Ireland is wishing a Happy and Peaceful Easter to everyone. Have a great family time.
🐇🐇🥕

02/04/2025

Celebrating World Autism Awareness Day: Understanding the Link Between Autism and Noonan Syndrome

Today, April 2nd, marks World Autism Awareness Day, a global initiative dedicated to increasing understanding, acceptance, and support for individuals on the autism spectrum. This day serves as a reminder of the importance of embracing neurodiversity and fostering inclusive communities.​

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition characterized by challenges with social interaction, communication, and repetitive behaviors. Individuals with autism often possess unique strengths, such as exceptional attention to detail, strong memory skills, and innovative thinking.​
(NeuroLaunch.com)

Noonan Syndrome (NS) is a genetic disorder that affects various parts of the body, leading to distinctive facial features, short stature, heart defects, and developmental delays. Recent studies have highlighted a significant connection between Noonan Syndrome and Autism Spectrum Disorder. Approximately 15-30% of individuals with Noonan Syndrome are also diagnosed with autism, a prevalence notably higher than the general population's rate of around 1.5%. ​

(noonansyndrome.com.au,esperanzaelc.com,NeuroLaunch.com)

This increased prevalence is believed to be due to shared genetic pathways. Mutations in the RAS/MAPK signaling pathway, which are responsible for Noonan Syndrome, have also been implicated in the development of autism. Understanding this connection is crucial for early diagnosis and tailored interventions, enabling individuals to leverage their strengths effectively.​
(EnviroLiteracy,noonansyndrome.com.au)

Recognising the strengths of individuals with both Noonan Syndrome and autism is essential. Many exhibit remarkable resilience, adaptability, and unique problem-solving abilities. By fostering supportive environments, we can empower them to reach their full potential.​

In honor of World Autism Awareness Day, various initiatives are underway to promote inclusivity. For instance, Irish Ferries has announced discounted travel for members of the autism charity AsIAm, aiming to make travel more accessible for individuals with autism and their families. ​
(disabilityinsider.com)

As we observe this day, let's commit to building a more inclusive society that values and supports neurodiversity. By increasing awareness and understanding, we can create environments where everyone, regardless of their neurological makeup, can thrive.​

For more information on the connection between Noonan Syndrome and autism, search for the article: Autism and Noonan Syndrome.

NSI

30/03/2025

🌷🌻🌼🌸🥀🌹🌷🌻🌻🏵💠🌺💐💠🌺🌼🌹🌸🌻💐🏵🌹🌸🏵🌻🌺🥀🌹🌹🌹
🌸🌼🌻🌻🌸🌼🌹💐🏵🌹🌼🌸🌸🌹🌸

Happy Mother’s Day to all the mums, grandmas, and aunties of children with Noonan Syndrome. Your strength, care, and dedication do not go unnoticed. Today is all about you—thank you for everything you do.

💖

🌻🌼🌸🥀🌹🌷🌻🌻🏵💠🌺💐💠🌺🌼🌹🌸🌻💐🏵🌹🌸🏵🌻🌺🥀🌹🌹🌹
🌸🌼🌻🌻🌸🌼🌹💐🏵🌹🌼🌸🌸🌹🌸

29/03/2025

**from Noonon Syndrome Foundation page**

ATTENTION!!!

Remote study opportunity for children with Noonan Syndrome!

Would you like to participate in a study from the comfort of your own home? Join our study, which focuses on children with Noonan Syndrome, aged 5-16, and their parents.

The study involves a non-invasive saliva test for the child and both parents, as well as a comprehensive neuropsychological evaluation for the child.

You can conveniently participate from the comfort of your own home. We offer a $50 honorarium and a thorough neuropsychological evaluation for your participation.

Learn more and check your eligibility here: [http://redcap.link/nf1_study](http://redcap.link/nf1_study?fbclid=IwZXh0bgNhZW0CMTAAAR2ubKzzYmG3oxkpTvVrtqpzzk7FshOlHj---u7BiVDZJ3N2XAqzNkEC3WA_aem_YJh66NQ6c-bl0ryQvB-VxA)

26/03/2025

📢 Important Announcement: Noonan Syndrome Family Day Update 📢

🌟 Dear NSI Community, 🌟

We regret to inform you that Noonan Syndrome Family Day will not be going ahead this year 😔. Due to unforeseen changes in circumstances and challenges in securing a suitable venue 🏠, we were unable to organise the event as planned. We know this news will be disappointing to many 💔, as Family Day has always been a wonderful opportunity for connection, support, and friendship 🤝💙.

Although we won’t have an official gathering this year, we still want to keep the community spirit alive! 🎉 If anyone is interested, we can arrange small, informal meet-ups for a cuppa ☕ and a chat 🗣️ at different locations around Ireland. Staying connected is important, and these casual meet-ups could be a great way for us all to catch up, share stories, and support each other.

If you have any suggestions, questions, or ideas for alternative ways to meet, please reach out to us via Facebook Messenger 💬. At the moment, this is the ONLY way to contact Noonan Syndrome Ireland (NSI), and we will do our best to reply as soon as possible. 💌

We truly appreciate your ongoing support 💙. Let’s keep our community strong, and we hope to see some of you for a friendly chat and a warm cuppa soon! ☕😊

📷 Drop a comment below if you'd like to arrange a mini-meetup! 📷

NSI

☕💬💙

Send a message to learn more

08/03/2025

🌸 Happy International Women's Day! 🌸

Today, we celebrate the strength and resilience of women, especially the incredible women in the Noonan Syndrome Ireland community.

Happy International Women's Day! 🌹🌸🏵🌷

28/02/2025

Today is Rare Disease Day!

A day to celebrate strength, resilience, and the incredible people living with rare diseases. With over 300 million affected worldwide, awareness and support can make a difference. (rarediseaseday.org)

One rare condition is Noonan syndrome, a genetic disorder that may bring unique challenges—but it does not define the incredible individuals who have it. With the right care and community, those with Noonan syndrome can thrive. (mayoclinic.org)

Let’s use today to spread hope, advocate for research, and remind everyone: Rare is strong. Rare is proud. Rare is not alone!

28/02/2025

💙❤️

28/02/2025

February 28: Benjamin's Story

Diagnosed shortly after birth with Noonan syndrome and cardiomyopathy, Benjamin’s family embraced the challenges with positivity and determination. With medical support, they have worked towards leading a fulfilling and normal life.

Katie Ballard shares her story of son Benjamin after receiving a life-changing diagnosis of Noonan Syndrome and cardiomyopathy