ANGEL AID – Spiritual Self-Care

Join Padma Gordon and a community of Rare Mothers in a meditation and discussion around spirituality. Connecting with your spirituality is a powerful way to tap into your inner strength and draw meaning from a confusing world.Join the Zoom workshop at 10 am PST here: https://us02web.zoom.us/meeting/register/tZwsf-Gtqz8oH9f_eW1g8BTgoiwHNUJr7_Kv?fbclid=IwAR1hyYcCmvP5vlqMjyfEPjDkHfqzMmlLnRDvsXeQF87xWdC6v0moEB79Afw

ALD Connect – Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Wednesday, March 3rd, 2021 at 8 PM EST for pre-, post-, and non-transplanted families. Please reach out to info@aldconnect.org if you have any questions.Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehl5mz6sc56f11b1

Courageous Parents NetworkGrief as a Superpower: A Conversation with Maria Kefalas, Author of Harnessing Grief: A Mother’s Quest for Meaning and Miracles

Is grief a superpower? Join CPN Founder Blyth Lord and author Maria Kefalas as they explore the big wide world of grief in the context of parenting a child living with a serious illness: how it shows up for us; why we are typically afraid of it; how we can adapt to and even, perhaps, …

Courageous Parents NetworkGrief as a Superpower: A Conversation with Maria Kefalas, Author of Harnessing Grief: A Mother’s Quest for Meaning and Miracles Read More »

ANGEL AID – Journaling and Resilience

oin Pamela Alma Weymouth for a an hour of journaling and discussion with other Rare Mothers. Pamela is a social workers and writer who creates a safe space for you to share and explore your feelings through journaling.https://us02web.zoom.us/meeting/register/tZMsdeyuqj0rGtz0MowiGsLN77bd0Ij4v3gW?fbclid=IwAR13pYn7fEEafHQ8tSaZBAGq3x7CQSf5Zq8DQgMmLbd7t1ZcJcpfuCy_L3E

ALD Connect – Reproductive Options for ALD Families

Please join us on Friday, March 5, 2021 at 5pm EST for a discussion about Reproductive Options for ALD families.Click here to register and receive the Zoom link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehlpvq27b8bf0df0 Panelists Dr. Sara Vaughn Fertility Specialist Spring Fertility Dr. Troy Lund Pediatric BMT Physician University of Minnesota Leukodystrophy Center Dr. Amber Salzman President & CEO Ohana …

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ANGEL AID – Spiritual Self-Care

Join Padma Gordon and a community of Rare Mothers in a meditation and discussion around spirituality. Connecting with your spirituality is a powerful way to tap into your inner strength and draw meaning from a confusing world.Join the Zoom workshop at 10 am PST here: https://us02web.zoom.us/meeting/register/tZwsf-Gtqz8oH9f_eW1g8BTgoiwHNUJr7_Kv?fbclid=IwAR1hyYcCmvP5vlqMjyfEPjDkHfqzMmlLnRDvsXeQF87xWdC6v0moEB79Afw

64th NAF Annual Ataxia Conference

National Ataxia Foundation is excited to host the 2021 conference 100% online, broadening the event’s reach and making it accessible to our global community. Whether this is your first time attending AAC or your 64th, we welcome you to enjoy the informative sessions and engaging networking opportunities. See old friends, make new friends, and hear …

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ANGEL AID – Journaling and Resilience

oin Pamela Alma Weymouth for a an hour of journaling and discussion with other Rare Mothers. Pamela is a social workers and writer who creates a safe space for you to share and explore your feelings through journaling.https://us02web.zoom.us/meeting/register/tZMsdeyuqj0rGtz0MowiGsLN77bd0Ij4v3gW?fbclid=IwAR13pYn7fEEafHQ8tSaZBAGq3x7CQSf5Zq8DQgMmLbd7t1ZcJcpfuCy_L3E

Brain Awareness Week

Brain Awareness Week is the global campaign to foster public enthusiasm and support for brain science. Every March, organisations from all over the world host imaginative activities in their communities that share the wonders of the brain and the impact brain science has on our everyday lives. Brain Awareness Week was founded by the Dana …

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2021 Pediatric Palliative Care WebinarsUsing POLST/MOLST to Engage in Meaningful Conversations in Pediatric Palliative Care

This webinar will offer an overview of using POLST/MOLST in pediatric care, and is applicable to both seasoned and novice POLST users. The presenters will focus on how a POLST can be used as a tool to speak with parents about goals of care and what different states are doing with POLST, across different settings …

2021 Pediatric Palliative Care WebinarsUsing POLST/MOLST to Engage in Meaningful Conversations in Pediatric Palliative Care Read More »

ANGEL AID – Spiritual Self-Care

Join Padma Gordon and a community of Rare Mothers in a meditation and discussion around spirituality. Connecting with your spirituality is a powerful way to tap into your inner strength and draw meaning from a confusing world.Join the Zoom workshop at 10 am PST here: https://us02web.zoom.us/meeting/register/tZwsf-Gtqz8oH9f_eW1g8BTgoiwHNUJr7_Kv?fbclid=IwAR1hyYcCmvP5vlqMjyfEPjDkHfqzMmlLnRDvsXeQF87xWdC6v0moEB79Afw

Cure VCP – Patient Happy Hours

Building upon our successful 2020 Happy Hours, we are pleased to announce our March Happy Hour dates and times! The Happy Hour is a great opportunity for our VCP disease family to connect with one another and share challenges, triumphs and tips, and to discuss what is most important to you, as patients and caregivers.Registration …

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The 2021 Krabbe Translational Research Network Meeting

The KTRN Steering Committee invites those working to advance research in the biology, chemistry, physics, and related technologies of Krabbe disease to this meeting. The goal of this disease-specific meeting exists to collectively bring researchers, clinicians, and pharmaceutical companies together. This meeting will foster a robust exchange of ideas, discuss pre/post publications and research as …

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ANGEL AID – Journaling and Resilience

oin Pamela Alma Weymouth for a an hour of journaling and discussion with other Rare Mothers. Pamela is a social workers and writer who creates a safe space for you to share and explore your feelings through journaling.https://us02web.zoom.us/meeting/register/tZMsdeyuqj0rGtz0MowiGsLN77bd0Ij4v3gW?fbclid=IwAR13pYn7fEEafHQ8tSaZBAGq3x7CQSf5Zq8DQgMmLbd7t1ZcJcpfuCy_L3E

Early Screening of Children for Developmental Delays: How Parents and Providers Can Help

This conversational session is designed to help participants: 1. Increase their awareness and knowledge about early screening while serving as advocates for prevention and intervention in their local communities and agencies. 2. Identify ways to increase their confidence and intent to identify and refer children for intervention earlier rather than later. 3. Learn effective strategies …

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World Neuroscience and Psychiatry Conference

Episirus Scientifica holds the 3rd Edition of 2020 World Neuroscience and Psychiatry Conference as one of the events that brings together eminent neurologists, psychiatrists, psychologists and neuroscientists experiences from different countries and exchanges their views through scientific discovery, interactive sessions, keynote lectures, workshops and offers exceptional sessions, presentations with great education and networking opportunities for …

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2021 ALD Family Weekend

ALD Family Weekend will be held March 19-21, 2021. Due to continuing COVID-19 restrictions and safety protocols, we will again welcome you all to a special online version of Family Weekend. All ages are welcome to join us free for three days of family fun, informative sessions, real time sing-a-longs, dance parties, and community building. …

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Cure VCP – Patient Happy Hours

Building upon our successful 2020 Happy Hours, we are pleased to announce our March Happy Hour dates and times! The Happy Hour is a great opportunity for our VCP disease family to connect with one another and share challenges, triumphs and tips, and to discuss what is most important to you, as patients and caregivers.Registration …

Cure VCP – Patient Happy Hours Read More »

ANGEL AID – Spiritual Self-Care

Join Padma Gordon and a community of Rare Mothers in a meditation and discussion around spirituality. Connecting with your spirituality is a powerful way to tap into your inner strength and draw meaning from a confusing world.Join the Zoom workshop at 10 am PST here: https://us02web.zoom.us/meeting/register/tZwsf-Gtqz8oH9f_eW1g8BTgoiwHNUJr7_Kv?fbclid=IwAR1hyYcCmvP5vlqMjyfEPjDkHfqzMmlLnRDvsXeQF87xWdC6v0moEB79Afw

Pound the Pavement for Peter 2021

Pound the Pavement for Peter is a Family 5K Fun Run that was started in 2009 in honor of Peter Hopkins, who, suffering from a Peroxisomal Disorder (PBD), lived his life with many disabilities, and eventually lost his life at age 3. This event is held to raise awareness and funds to help families and …

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Virtual Raleigh Run for Rare

Join us for the 2021 Virtual Raleigh Run for Rare! Participate in a 5K Run or 1 Mile walk from in your neighborhood. Take a photo and share your results, winners will be chosen from each age group. https://mpssociety.org/event/virtual-raleigh-run-for-rare/

ANGEL AID – Spiritual Self-Care

Join Padma Gordon and a community of Rare Mothers in a meditation and discussion around spirituality. Connecting with your spirituality is a powerful way to tap into your inner strength and draw meaning from a confusing world.Join the Zoom workshop at 10 am PST here: https://us02web.zoom.us/meeting/register/tZwsf-Gtqz8oH9f_eW1g8BTgoiwHNUJr7_Kv?fbclid=IwAR1hyYcCmvP5vlqMjyfEPjDkHfqzMmlLnRDvsXeQF87xWdC6v0moEB79Afw

Courageous Parents NetworkTransitioning to Adulthood: When the Dependent Child Reaches Adulthood

Parenting is a lifelong process, and it is particularly so for parents of children diagnosed with a serious illness, where the child’s chronological age may not correspond with their developmental age. New challenges emerge as a child grows older and bigger. Pediatric providers or facilities may raise concerns about the ability to continue caring for …

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