This edition of the newsletter includes self-care tips, upcoming webinars and more.
I hope you all had a wonderful Holiday season and New Year!
January is Self-Love Month. Caregiver burnout is a genuine concern within our community. In 2023, I challenge you to take more time for yourself. Whether it is reading, taking a solo walk, driving with the music blaring, enjoying time with friends or binging on that new Netflix series you’ve been wanting to watch, commit to yourself and make yourself a priority. To quote Dr. Seuss, “Today you are You, that is truer than true. There is no one alive who is Youer than You.” Stay true to you. 💙💛
The following articles provide self-care tips:
- Self-Care Tips for Parents
- 8 Parent Self Care Ideas
- Why Self-Care is Essential in Parenting
- Importance of Self-Care
- Caregiver Burnout
Cheers to a New Year filled with happiness, good health and more self-care!
Webinars
Down Syndrome Regression Disorder (DSRD) is an uncommon phenomenon in persons with Down syndrome where there is a sudden loss of cognitive abilities, insomnia, hallucinations, delusions, slowness in movements and processing speed, catatonia, and mutism or changes in language production.
The cause of this condition is unknown although a minority of individuals with this symptom cluster have been found to have brain inflammation which has been responsive to immune treatments. An upcoming clinical trial, being led by doctors at the Children’s Hospital Los Angeles and the University of Colorado, will be testing new immune-based treatments for this condition.
This webinar will explore tips and tools for addressing sexuality one-on-one with your children. We will explore why this topic can be difficult to approach and useful tools that will help you become more comfortable and confident and communicate about this sensitive topic.
Important 2023 Family Weekend Update
In case you missed the previous email that went to past Family Weekend attendees, please read this important update about the the 2023 Family Weekend:
In 2022, we were excited to finally have a “normal” Family Weekend just in time for our 10th anniversary! It was evident that families were also looking forward to Family Weekend. Over 700 families joined us at 19 Great Wolf Lodge locations in North America! Based on the photos and feedback, a great time was had by all attendees, but we know we can do better. We want to do better for our families!
In order to meet the needs of our devoted Family Weekend attendees, to bring this event to even more families, and to find new ways to collaborate with local and national supporters, Family Weekend will be on a one-year hiatus in 2023.
We are already looking forward to seeing you in 2024 with a bigger and better weekend, more affordable Saturday night events, and some new features to enhance your favorite weekend of the year!
We hope to see you in 2024!
Statement on the Accelerated Approval of Leqembi to Treat Mild-Sate Alzehimer’s Disease in the General Population
On Friday, January 6, the U.S. Food & Drug Administration (FDA) granted accelerated approval for lecanemab, an anti-amyloid drug to treat Alzheimer’s disease that was developed by Eisai and Biogen. Lecanemab is now branded as “Leqembi”.
Leqembi is approved to treat patients in the mild dementia stage of Alzheimer’s disease who also have “confirmed presence of amyloid beta pathology” in the brain.
There remain substantial barriers to Leqembi being deemed safe and accessible for people with Down syndrome. As far as we know, no one with Down syndrome was included in the Leqembi clinical trials to date. That means a safety study specifically geared to people with Down syndrome should take place prior to widespread use in our community.
We will continue to update you as we learn more this year about whether Leqembi will be reimbursed and what access people with DS will have to this therapy.
The full statement can be read here.
LuMind IDSC Foundation
20 Mall Rd Ste 200, Burlington, MA 01803
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