ALD Hope

08/24/2026

🙏 Please keep 10-year-old Jaber from Kuwait in your prayers. 🇰🇼💙

Jaber has been battling cerebral X-linked adrenoleukodystrophy (cALD) for the past five years. Sadly, the disease has taken away his senses and motor abilities.

Please join us in praying for Jaber—for healing, comfort, and relief from his suffering, and for strength, patience, and peace for his family as they continue to stand by his side. 🤲🤍

May Allah surround Jaber with His mercy, grant him healing and comfort, and give his family the strength to keep going through this incredibly difficult journey.

Please keep Jaber and his family in your prayers. 🙏💙

08/23/2026

💔 Heartbreaking News from the ALD Community

It is with a very heavy heart that ALD Hope shares the devastating news of the passing of Abu Talib, a brave 9-year-old boy from South Africa who fought cerebral ALD for two years.

Abu Talib endured so much throughout his journey with this cruel disease. Today, another precious child has been taken far too soon, leaving behind a grieving family and an ALD community that feels this loss deeply.

Our hearts and prayers are with his parents, his little brother Ayoub, and everyone who loved him during this unimaginable time.

May Abu Talib rest in eternal peace, free from pain and suffering. 🕊️💙

Every child we lose reminds us why we must keep fighting for earlier diagnosis, newborn screening, better treatments, and ultimately, a cure for ALD.

Rest in peace, Abu Talib. You will not be forgotten. 💙🕊️

Bibi Aysha Goldschmidt

08/20/2026

🚨 42 دولة. 514 شخصًا. لكن مجتمع ALD حول العالم أكبر بكثير من ذلك! 🌍💙

كل شخص مصاب بـ الحثل الكظري وبياض الدماغ (ALD) يشارك في مشروع الخريطة العالمية لـ ALD يساعدنا على إظهار الحجم الحقيقي لمجتمعنا وجعل صوتنا أقوى.

لماذا مشاركتك مهمة؟

لأن الأرقام تصنع فرقًا.

كلما زاد عدد المشاركين، استطعنا أن نُظهر للباحثين وشركات التكنولوجيا الحيوية والجهات الصحية والحكومات والداعمين مدى الحاجة إلى المزيد من الأبحاث والاستثمار وتطوير علاجات جديدة لـ ALD.

⏱️ المشاركة تستغرق حوالي 3 دقائق فقط.

إذا كنت مصابًا بـ ALD، أو كنت ولي الأمر القانوني لشخص مصاب ويعيش حاليًا مع ALD، نرجو منك المشاركة وإضافة صوتك إلى الخريطة.

💙 لا تدع بلدك أو قصة عائلتك مع ALD غائبة عن الخريطة.

شخص واحد يمثل قصة…
المئات يمثلون مجتمعًا…
والآلاف يمكن أن يصبحوا قوة حقيقية للتغيير.

شاركوا وساعدونا في نشر الاستبيان بين عائلات ALD حول العالم. 🌍

https://aldlandscape.org/

معًا نستطيع أن نجعل العالم يرى الحجم الحقيقي لمجتمع ALD.

At ALD Connect, we are committed to understanding the global landscape of adrenoleukodystrophy: where individuals with ALD live, their experiences, and how we can best support them.

We are thrilled to be partnering with ALD organizations from around the world through the Global ALD Advocacy Network to build a clearer picture of our community. So far, 514 people from 42 countries have participated in the ALD Landscape Project.

The more individuals with ALD we document, the more we can demonstrate the urgency of developing new treatments.

There is strength in numbers. They help demonstrate the need for investment in ALD to biotech companies, academic institutions, clinicians, researchers, government agencies, and donors, all of whom play a critical role in driving progress. By participating in this global effort, you are helping build a stronger collective voice for advocacy, clinical care, education, research, and treatment development.

If you have been diagnosed with ALD, or are the legal guardian of someone currently living with ALD, please take three minutes to complete our short form.

Help us reach the next 500. Every person counted strengthens the case for greater attention, investment, and action in ALD.

https://aldlandscape.org/

08/20/2026

🚨 42 countries. 514 people. But the global ALD story is much bigger.

Every person with ALD who adds their information to the ALD Landscape Project helps make our community more visible and our collective voice stronger. 🌍💙

Why does your participation matter?

Because numbers have power.

They help show researchers, biotech companies, healthcare systems, governments, and funders that ALD deserves greater attention, investment, research, and better treatments.

It takes only 3 minutes to participate.

If you have been diagnosed with ALD, or you are the legal guardian of someone currently living with ALD, please add your voice.

💙 Don’t let your country — or your ALD story — be missing from the map.

One person is a story.
Hundreds are a community.
Thousands can become a force for change.

Please participate and share this with other ALD families. 🌍

https://aldlandscape.org/

Together, we can make sure the world sees the true size of the ALD community.

At ALD Connect, we are committed to understanding the global landscape of adrenoleukodystrophy: where individuals with ALD live, their experiences, and how we can best support them.

We are thrilled to be partnering with ALD organizations from around the world through the Global ALD Advocacy Network to build a clearer picture of our community. So far, 514 people from 42 countries have participated in the ALD Landscape Project.

The more individuals with ALD we document, the more we can demonstrate the urgency of developing new treatments.

There is strength in numbers. They help demonstrate the need for investment in ALD to biotech companies, academic institutions, clinicians, researchers, government agencies, and donors, all of whom play a critical role in driving progress. By participating in this global effort, you are helping build a stronger collective voice for advocacy, clinical care, education, research, and treatment development.

If you have been diagnosed with ALD, or are the legal guardian of someone currently living with ALD, please take three minutes to complete our short form.

Help us reach the next 500. Every person counted strengthens the case for greater attention, investment, and action in ALD.

https://aldlandscape.org/

08/19/2026

Since we launched our campaign to support the Connected Care for Canadians Act, people across Canada have been sharing personal experiences on how fragmented care has affected their lives.

People deserve to hold their own history, especially when it comes to their medical records. Help us pass this fall.

Learn more: https://bit.ly/4oBs1y1