Helping Hands for GAND

08/21/2026

💜💚 Wear your GAND pride this September!

One of the easiest ways to start a conversation about GAND is simply to wear it.

Order your GAND Awareness gear now so you're ready for GAND Awareness Month and GAND Awareness Day on September 16.

When someone asks what GAND is—that's your opportunity to Shine a Light on GAND.

👕 Shop the new “Shine a Light on GAND” Awareness Collection and order now so you’re ready for September!

🧢 Shop the Official GAND Merchandise Collection for hats, water bottles, apparel, and more!

👉 Looking for more ways to get involved? Visit our GAND Awareness Day page for resources and ideas to help you Shine a Light on GAND.

GATAD2B.org/gand-awareness-day

08/18/2026

When Helping Hands for GAND began, many families had never met another person living with GAND.

Today, our community spans the globe. Although GAND is an ultra-rare disorder, awareness has the power to change lives.

When more people know about GAND:

💜 Families find support sooner.
💚 Teachers and therapists better understand our children.
💜 Healthcare providers recognize the condition.
💚 Researchers discover new opportunities.
💜 Communities become more inclusive.
💚 More support becomes available for families around the world.

Awareness has helped families find support, connected researchers, inspired collaboration, and created hope.

This September, we're continuing that mission by celebrating GAND Awareness Month, culminating in GAND Awareness Day on September 16.

💻http://gatad2b.org/gand-awareness-day

08/14/2026

Wondering how you can participate during GAND Awareness Month?

Here are five simple ways to Shine a Light on GAND:

💜 Wear your GAND Awareness shirt
💚 Share your family's story
💜 Create a peer-to-peer fundraiser
💚 Talk to your school or workplace about GAND
💜 Invite one new person to learn about GAND

You don't have to do everything.
Just start one conversation.

💻http://gatad2b.org/gand-awareness-day

08/13/2026

🌟 NEW! Shine a Light on GAND Gear Is Here! 💜💚

GAND Awareness Month is almost here, and our new Shine a Light on GAND collection is ready!

This September, wear your GAND gear proudly and help start conversations, spread awareness, and introduce more people to GAND. Invite your friends, family, teachers, therapists, coworkers, and supporters to join you, too!

⭐ IMPORTANT: Order by August 24 to help ensure your gear arrives before GAND Awareness Day on September 16!

Shop the new collection today and get ready to Shine a Light on GAND all September long. 💜💚

Then snap a photo in your gear and share it with us throughout September!

https://www.bonfire.com/gand-awareness-2026/

Shine a light on this ultra-rare condition throughout GAND Awareness Month!. Help us raise awareness of GAND, a rare neurodevelopmental disorder with over 500+ known ...

08/12/2026

💜💚 GAND Awareness Month is almost here!

September is our opportunity to come together as a global community to Shine a Light on GAND and help more people discover and understand GATAD2B-associated neurodevelopmental disorder (GAND).

Throughout September, we’ll share stories, educate others, celebrate our incredible GAND community, and raise funds to help Helping Hands for GAND continue supporting individuals with GAND and their families.

Now is the time to get ready!

✨ Visit our GAND Awareness Day webpage
👕 Order your GAND Awareness gear
📣 Explore our ready-to-share Awareness Kit
💜 Create your GAND Awareness Month fundraiser
✉️ Download letters to share with schools, workplaces, and community organizations
📄 Personalize your About Me page
💚 Start thinking about how YOU will Shine a Light on GAND

You don't have to do everything. Every conversation helps someone new discover GAND.

👉 Get started: GATAD2B.org/gand-awareness-day

September is GAND Awareness Month. September 16 is GAND Awareness Day. Let's Shine a Light on GAND! 💜💚

08/09/2026

✨ "Because of the GAND Community..." ✨

As we look back at our 2026 GAND Gathering, this final graphic note created by Ink Factory is perhaps our most special one yet—because every single thought, phrase, and message came directly from YOU, our GAND family. 💜

When asked to fill in the blank—Because of the GAND community...—here is what our community shared:

🌟 WE ARE CONNECTED: "I found my tribe." "We are not alone!" "Lifelong friendships with true, kindred spirits."

🛡️ WE ARE SUPPORTED & UNDERSTOOD: "I can ask any question." "No judgment." "There is someone to call and lean on—people who just get it."

💡 WE ARE EMPOWERED: "I can tackle anything." "I feel less scared." "Knowledge is power." "New ideas to help my kid."

💖 WE HAVE PURPOSE & HOPE: "Gratitude for the little things." "Small wins = BIG wins!" "Love doesn't need words." "The world is a brighter place."

From sharing the same struggles and celebrating every milestone, to supporting research for targeted treatments and lifting each other up on the hard days—this community is our strength.

As we prepare for GAND Awareness Day on September 16th, we want to hear from everyone in our global family.

💬 In the comments below, complete the sentence for us:

"Because of the GAND community, I..." 👇❤️

08/08/2026

💙 By Siblings, For Siblings: The Power of GAND Sibling Support 💙

One of the most inspiring moments at the 2026 GAND Gathering was our GAND Sibling Support session—led completely by one of our incredible GAND siblings!

Siblings play such a vital, unique role in our rare disease journey, and this session provided an honest, empowering space to share their perspectives. Here are some of the key takeaways captured in this graphic note by Ink Factory:

✨ Togetherness & Connection: Knowing "you aren't alone," reconnecting with old friends, and seeing their siblings with GAND connect with others are often the highlights of the conference.

✨ Adapting & Communicating: Learning to navigate communication hurdles—whether through sign language, personality, or patience—strengthens their bond and builds life skills. "You can do anything!"

✨ Key Insights for Parents: Parents need to understand that siblings sometimes "need their own space," that "it’s ok to ask questions," and that open dialogue helps everyone thrive.

✨ Perseverance & Community: While "it might get difficult," leaning on trusted friends, community, and support systems helps siblings persevere and thrive. Plus, as one sibling put it, growing up in a rare disease family naturally "weeds out bad friends!"

We are endlessly proud of our GAND siblings for sharing their voice, wisdom, and heart with our community. 🌟

💬 To our GAND families: What is something special your non-GAND children have taught you along this journey?

08/07/2026

🌱 Navigating GAND: From Adolescence to Adulthood 💜

Transitioning from childhood into the teenage years and adulthood comes with unique milestones, decisions, and advocate roles for GAND families. At the 2026 GAND Gathering, our GAND Adolescence to Adulthood session unpacked the practical realities, challenges, and roadmaps for this stage of life.

Here are key takeaways and practical community tips captured in this graphic note by Ink Factory:

🗺️ Navigating Educational & Life Transitions: From blended pre-K to junior high, special ed classes, and public high school, managing student-teacher ratios and job training services helps build life skills for navigating independently.

🗣️ The Role of the Advocate: Caretakers can often feel "consumed with responsibility." Being a strong advocate means using existing laws (like IDEA), understanding legal guardianship (at age 18), separating finances, and continuing to seek out camps, aids, and specialized environments.

🩺 Body Changes & Practical Puberty Tips: Puberty brings distinct health and hygiene considerations. As kiddos become more interested in exploring private areas or start their menstrual cycle, practical solutions like back-zip pajamas can be a game-changer for limiting access and reducing messes (including bloody hands). Options like period un**es, bidets, or birth control can also support hygiene and comfort. Every body is different!

🧠 Delayed Adolescence & Evolving Needs: Some families report experiencing delayed adolescence, where behavioral challenges like meltdowns, impulsivity, and emotional instability re-emerge. For some, working with medical providers to find medications that manage impulsivity or stabilize mood has been especially helpful.

🏡 Looking Ahead: Exploring group homes, community integration, and independent life skills helps ensure our young adults continue to grow, learn, and thrive.

Thank you to everyone who shared their experiences and wisdom to help guide our community through every age and stage of the GAND journey! 🌟

💬 For parents who have navigated or are currently in the adolescent/adult transition with GAND: What is one piece of advice or practical tool that helped your family most during this phase?

08/06/2026

🏀 Adaptive Sports: Building Independence, Joy & Community! ⛷️

At the 2026 GAND Gathering, Delphine Labbé, PhD (Associate Professor of Disability and Human Development at UIC), shared invaluable insights on the transformative power of adaptive sports for individuals with disabilities!

Key takeaways from her presentation captured in this graphic note by Ink Factory:

✨ Beyond Physical Therapy: Adaptive sports (like assisted biking, skiing, and kayaking) are dynamic activities that foster independence, build confidence, and feel like fun while working on physical goals.

🧠 Holistic Health Impact: Participation improves mental health, emotional regulation, and social connection—often after just one session!

🤝 Overcoming Barriers: From finding the right adaptive equipment to addressing interpersonal barriers, access to trained coaches, supportive staff, and local resources makes all the difference.

💪 Focus on Strengths: With the right setup, lots is possible! Don't hesitate to ask your child's PT/OT for local adaptive equipment and program recommendations.

A big thank you to Dr. Labbé for highlighting how taking risks, embracing challenges, and focusing on strengths helps our GAND individuals thrive! ❤️

💬 What adaptive sports or recreation activities has your GAND family tried and loved? Share in the comments below!

08/05/2026

💚 Caring for the Caregiver: Wellness, Healing & Self-Care 💚

Caregivers spend so much energy looking after others, but taking care of yourself is essential. At the 2026 GAND Gathering, Catherine Muich, LMFT (Licensed Marriage and Family Therapist), led an insightful and supportive Caregiver Wellness workshop focused on emotional health, somatic practices, and practical self-care.

Here are the key takeaways captured in this visual note by Ink Factory:

🌿 Understanding Grief & Trauma: Grief is not linear—there will be ups and downs, and that’s okay. Emotions like anger are neutral, and working through trauma with tools like therapy (including EMDR) can help you process and move forward. Remember: don't be hard on yourself!

🥄 Managing Energy & Priorities: Ask yourself, "How many spoons do you have today?" Notice where your energy goes—toward work, friends, your partner, or family dynamics—and focus on what fills your bucket.

🧘 Somatic Practices: Physical pain and mental strain (like IEP meeting anxiety!) affect the body. Incorporating somatic grounding—deep breathing, exercise, yoga, painting, or mindfulness—helps center yourself and release stored stress.

🤝 Practical Self-Care: Self-care isn't just a buzzword; it's about making space for hobbies, music, solo time, date nights, and professional support from a licensed therapist when needed. You deserve hope, connection, and answers.

A huge thank you to Catherine Muich for guiding our community through these powerful reminders to pause, breathe, and prioritize our own well-being. ❤️

💬 What is one small thing you do during a busy week to fill your own bucket? Share below!