The following is a description of a webinar being hosted by the United Leukodystrophy Foundation: Join us for an insightful webinar, “Family Planning as a Carrier,” hosted by Julie Cohen, ScM, CGC from Kennedy Krieger Institute. This webinar will offer valuable information and a supportive space for carriers and their families to learn, ask questions,…
¡Únase a nosotros para una llamada comunitaria ALD en español! Esta convocatoria es un proyecto conjunto entre la Fundación Lautaro te Necesita y ALD Connect y será facilitada por Verónica de Pablo y Jean Cappello. La convocatoria se realizará el 11 de febrero a las 4pm EST (hora UTC-5) / 18 hs de Argentina. Regístrese…
Please join us for a topic-based Community Call focused on mental health, facilitated by Jesse Torrey, LAC. This month's call will be focused on the topic, "Rare But Not Alone: How Do We Build a Supportive Community?". The call will be held on Sunday, February 16th at 5pm Eastern Time. Please reach out to [email protected] if…
Please join ALD Connect for a discussion about ALD events, programs, projects, and initiatives at a Patient-Led Planning Committee meeting. This meeting, also known as Workgroup 4, is a place for ALD patients and families to lead the way in brainstorming ideas and resources for the ALD community. This group operates on a drop-in basis,…
Please join us for a 90-minute Community Call co-hosted by ALD Connect (US-based) and Alex TLC (UK-based) on Sunday, February 23rd at 10am Eastern Standard Time (UTC-5 Time)/ 3pm Greenwich Mean Time. Everyone in the ALD community is welcome to join. Reach out to [email protected] if you have any questions. Please register using the following…
Please join us for a community call on Monday, February 24th at 7 PM EST for symptomatic women with ALD facilitated by Kathleen O'Sullivan-Fortin and Julie Chu. Please reach out to [email protected] if you have any questions. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/t67hj3e *Please note this call is for patients and caregivers only
Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, February 25th at 7 PM EST for AMN men. *Please note this call is for men with AMN. If you are a caregiver who wants to support a son or partner who has AMN, please send us an email.…
Please join us for a community call facilitated by Kathleen O'Sullivan-Fortin and Christie Higuera on Wednesday, February 26th at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. You can register for the call using the following link: https://lp.constantcontactpages.com/ev/reg/s6zbxcs *Please note this call is for…
Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, February 27th at 5:00 PM EST for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/872ypnv *Please note this call is for patients and caregivers only.
Join the Courageous Parents Network to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare wishes upstream of an emergent/urgent medical event, medical implications of and quality-of-life considerations related to advance directives, and currently available directives. Presented by…
Join us for a webinar titled "Grief 101: Updates, Hard Truths, and Myths". Grief is a natural and important response to loss, change, or a profound emotional experience. It allows the griever to process emotions, reflect on what has happened, and begin to heal over time. There is no "right" way or timeline for grief—everyone…
The following is a webinar description put together by the Courageous Parents Network: Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with medical complexity shapes them. This session will be moderated…
