Alana Down Syndrome Center at MIT

Becoming more independent is a goal for many adolescents and adults with Down syndrome. While this goal varies significantly from person to person, creating autonomy is important to helping individuals thrive. It can range from wanting to become more independent with toileting and dressing to wanting to work towards living on one’s own. Today we are sharing a webinar entitled, "Traveling the Road Towards Independence" with presenter Lina Patel, PsyD.: https://www.youtube.com/watch?v=kkkhtW1wEQ0

Did you know that 90% of the Down syndrome population will receive an Alzheimer's diagnosis at some point in their lifetime? Advancements are being made to slow the progression of Alzheimer's Disease, but the Down syndrome community is being left behind. For Alzheimer's Awareness Month, we ask that you to join us in raising awareness of the injustice that our community is facing. We believe people with Down syndrome deserve equal access to, and insurance coverage for, life-changing drugs. Do you? Sign the online petition today: https://medequity4ds.org/

If you or someone you know is an adult with Down syndrome experiencing symptoms of depression, consider joining this treatment study at Massachusetts General Hospital.

Click on the link or copy and paste it into your browser for more information:
https://rally.massgeneralbrigham.org/study/down_syndrome_depression

The day we have been waiting for! A major pharmaceutical company has announced that the Down syndrome population will see a clinical trial of a new Alzheimer’s drug.

People with Down syndrome will be invited to participate in a clinical trial of donanemab, the anti-amyloid Alzheimer’s drug developed by Eli Lilly and Company (Lilly). The news was announced in comments by Lilly’s Chief Medical Officer, David Hyman, MD, during a U.S. Food & Drug Administration (FDA) Advisory Committee meeting on the status of the drug.

Read more online: https://lumindidsc.org/downsyndrome-clinical-trial-for-alzheimers

Do you or a loved one have Down syndrome? Consider taking part in a clinical study testing an investigational vaccine to help us find a treatment for Alzheimer’s in people with Down syndrome. Dementia affects many people with Down syndrome, but there is currently no treatment available.

You may be able to join the ABATE Study if you:
• Have Down syndrome
• Are between 35 and 50 years old
• Have a study partner

Do you or a loved one have Down syndrome? Consider taking part in a clinical study testing an investigational vaccine to help us find a treatment for Alzheimer’s in people with Down syndrome. Dementia affects many people with Down syndrome, but there is currently no treatment available.You may be able to join the ABATE Study if you:• Have Down syndrome• Are between 35 and 50 years old• Have a study partnerIf interested, please complete this screening survey. For more information you and your study partner can learn more by visiting Abate-study.com or by contacting us at 617-726-6297 or [email protected].

Link in bio.

We are excited for the upcoming Trisomy 21 Research Society's International Conference. We hope to see some of you there, as we learn about the latest research science for Down syndrome.

https://t21rs2024.com/

Where does the U.S. rank??

An international group of investigators, led by researchers from Massachusetts General Hospital, conducted the first-ever survey to measure the quality of life of people with Down syndrome around the world to try and answer that question. Responses from 50 countries were analyzed and each country was ranked on how well it supports people with Down syndrome across five domains of wellbeing: community inclusion, education, health, independence, and policy,

Check out the interactive map and read the results here: https://www.downsyndromequalityoflife.com/map.html

May is Mental Health Awareness Month. 🧠

Thankfully, is becoming a less taboo topic. But even though we are talking about it, it doesn't make navigating any less difficult. Our Down Syndrome Clinic to You (DSC2U.org) has several resources at your fingertips that you can tap into to help with the caring for your loved one with that is experiencing mental health challenges.

Check out 👉 dsc2u.org/primarycare for mental health resources and more.

We were so happy that our former Alana Fellow, Dr. Hiruy Meharena, returned to MIT to tell us all about his ongoing research at UCSD to understand the genomic and molecular signatures of Down syndrome!

Hiruy helped us celebrate 30 years of the Tsai lab of MIT, where he was instrumental in developing and studying patient-derived stem cell models of Down syndrome.

Through the work of parents and doctors, important advances have been made to understand and treat Down syndrome regression disorder (DSRD).

"...because people with Down syndrome have an extra chromosome 21, they have extra copies of these immune genes — which appear to dysregulate and ramp up the immune system’s response. The result, Espinosa said, is a body that acts like it’s “constantly trying to fight a virus that is not there.' "

A mystery illness stole their kids’ personalities. These moms fought for answers. Their children’s decline was dramatic, with patients losing function in days or weeks, including the ability to talk, move or take care of themselves.

The MDSC is thrilled to offer the upcoming education webinar, Language and Literacy-Access and Opportunities on Tuesday, May 21st from 7-8:30pm ET

This webinar will be presented by Caitlin Shanley, MS CCC-SLP, Speech Language Pathologist Boston Public Schools.

During this presentation, we will discuss strategies to provide communication opportunities for children in the early stages of language development and beyond as well as the many ways to increase a student’s access to literacy at all ages. This discussion will include, but is not limited to, discussing early language development tips, communication logs, play, tapping into your student's interests and motivation, low and high tech AAC use in Play and Literacy, shared reading resources, and how using AI/ChatGpt can support your student/child. Caitlin will use examples from her classroom and also provide take home resources for families/educators to apply at home and in the classroom.

THIS WEBINAR WILL RECORDED!

Register at: https://mdsc.zoom.us/webinar/register/WN_8IxDNNrYTZKJ7BnpHjRsUw

A warm welcome from the new scientific program director of Alana Down Syndrome Center at MIT, Rosalind Firenze! If you have thoughts or questions about the center, please reach out.

We were proud to take part in the 40th Anniversary Conference of the Massachusetts Down Syndrome Congress (MDSC) this past weekend. Director Li-Huei Tsai presented a new study testing whether non-invasive sensory stimulation can benefit cognition in people with Down syndrome. https://alana.mit.edu/2024/03/27/tsai-presents-non-invasive-stimulation-study-at-massachusetts-down-syndrome-congress/

Wondering what the MIT's ADSC was up to this year? Check out our newsletter!
In Englishhttps://alana.mit.edu/wp-content/uploads/2023/12/2023-Alana-NewsletterEng.pdf
In Portuguesehttps://alana.mit.edu/wp-content/uploads/2023/12/2023-Alana-Newsletter-Portuguese.pdf

alana.mit.edu

Members of the ADSC had a great time at the Massachusetts Down Syndrome Congress (MDSC) Buddy walk! Beautiful weather, wonderful people, great fundraiser for helpful collaborators.

Happy World Down Syndrome Day 3.21, from the Alana Down Syndrome Center! We had fun with our socks (and check out that sock chromosome 🧐). Spread the word, and create awareness about Down syndrome!

A timely article about the status of Alzheimer's treatments for the DS community:

Alzheimer's meds are here. But for the Down syndrome community, it's still the 1980s Thirty years ago, the Down syndrome community helped scientists uncover critical learnings about the genetic basis of Alzheimer’s disease. | Thirty years ago, the Down syndrome community helped scientists uncover critical learnings about the genetic basis of Alzheimer’s disease. Now in 2023, the...

Our wonderful former director, Angelika Amon, has won a posthumous award for being an outstanding mentor. Boy do we miss her!

Compassion in the details MIT Professor Angelika Amon was recognized posthumously as Committed to Caring for her wide-reaching and personal care for her students, as well as the unique mentorship dynamic she developed with each of her students.

Wondering what we've been doing all year here at MIT? Interested in receiving our annual newsletter? Contact us at [email protected] to get added to our list!

Get ready for our biennial symposium! This year the ADSC has joined forces with MIT's Aging Brain Initiative, and will be presenting our joint symposium this October 5th and 6th. Find more information, and register, here!

Glial and Neuronal Biology of the Aging Brain Presented by the ALANA DOWN SYNDROME CENTER and AGING BRAIN INITIATIVE at the Picower Institute for Learning and Memory, MIT.

Mark your calendars! The ADSC symposium is combining forces with MIT's Aging Brain Initiative to sponsor this year's seminars on Oct 5th and 6th, focusing on neurodegeneration in neurotypical and people with DS.
More info and the speakers list can be found here!
https://alana.mit.edu/2022/06/28/upcoming-alana-down-syndrome-aging-brain-initiative-symposium/

The Picower Institute at MIT is studying how the brain responds to light and sound stimulation in individuals with Down syndrome. People with DS ages 25-65 interested in a study visit (at MIT in Cambridge, MA) can learn more by emailing [email protected] or calling (617) 258-7723.

Come be part of our study! And thanks MDSC for getting the word out!

We're still recruiting for this study! Adults with DS over the age of 25- its an easy, fun, one-time visit to MIT, and you can help advance brain research!

We are doing a research study! We want to test if our flickering light and sound device has an effect on the brain in people with Down syndrome.
During a 3.5hr visit to MIT, we will ask you to:
-Fill out a questionnaire
-Get a brain wave recording by wearing a cap like in the picture
-Watch a movie with flickering lights and buzzing sounds playing in the background

To participate, we are looking for people with Down syndrome who:
-are between 25-65 years old
-have had no recent seizures
For more info, contact Gabrielle de Weck ([email protected] 617-258-7723) or visit https://alana.mit.edu/volunteer-for-research/

We are doing a research study! We want to test if our flickering light and sound device has an effect on the brain in people with Down syndrome.
During a 3.5hr visit to MIT, we will ask you to:
-Fill out a questionnaire
-Get a brain wave recording by wearing a cap like in the picture
-Watch a movie with flickering lights and buzzing sounds playing in the background

To participate, we are looking for people with Down syndrome who:
-are between 25-65 years old
-have had no recent seizures
For more info, contact Gabrielle de Weck ([email protected] 617-258-7723) or visit https://alana.mit.edu/volunteer-for-research/

The Washington Post has an extremely interesting story about the intersection of Down syndrome and Alzheimer's disease, something we here at the ADSC care about immensely.
Also, as a reminder, we are doing a clinical trial for adults with DS for a device that may affect Alzheimers. For info on our trial, please visit https://alana.mit.edu/volunteer-for-research/

And please take the time to read!
https://www.washingtonpost.com/health/2022/04/07/down-syndrome-alzheimers-disease-aduhelm/

For people with Down syndrome, a longer life, but under a cloud Up to 90 percent of people with the genetic condition develop Alzheimer’s disease.

Today is 3/21, or World Down Syndrome Day! Celebrate with us as we work towards our mission to improve health, ability, inclusion and quality of life for people with Down syndrome.
To learn more:
https://www.un.org/en/observances/down-syndrome-day

Internship opportunity!
MIT Dive into Healthcare Innovation and Venture Exploration Program (DHIVE) [pronounced “dive”]
A Deep Dive into Healthcare Entrepreneurship
8-week Summer Internship Program June 6 – July 29, 2022
Applications are open now and will be reviewed on a rolling basis.

MIT Sandbox is launching another exciting program focused on healthcare entrepreneurship! MIT DHIVE Summer 2022 https://sandbox.mit.edu/dhive invites undergraduate and graduate students who are interested in healthcare entrepreneurship to apply for an 8-week (6/6-7/29) sponsored internship program:
- Learn more about the needs and challenges of urgent health issues from the experts in the field
- Engage in ideation and team formation activities
- Transform ideas into viable solutions

DHIVE summer 2022 healthcare tracks:
• Down Syndrome and Similar Disabilities enhance the lives of people with Down Syndrome and different intellectual abilities or challenges; offered in partnership with the MIT Deshpande Center https://sandbox.mit.edu/dhive-down-syndrome
• Inflammatory Bowel Disease (IBD) - empower patients and transform the approach to the maintenance of chronic diseases; offered in partnership with the MIT Center for Microbiome Informatics and Therapeutics
• Long Covid and Lyme Disease – develop novel methods and technologies to address the range of issues caused by chronic infectious diseases
• Catalyst Health-Tech Innovation – collaborate with Catalyst innovation teams to advance entrepreneurial health-tech projects, and engage with a diverse, international network of health care and technology leaders; a partnership with the MIT linQ Catalyst program.

Program highlights:
• 8-week program June 6 - July 29
• Participation options:
o Paid Internship:
Degree-seeking MIT graduate and undergraduate students from any department who can commit at least 20 hours/week.
MIT graduate students on RAship who can devote 10 hours per week.
o Unpaid Internship:
Anyone interested in biomedical innovation who is able to devote at least 10 hours per week.
We welcome post-docs, non-MIT students, and non-students
• Educational talks focused on the challenges and unmet needs related to the DHIVE track
• Entrepreneurship-focused workshops and mentorship
• Opportunity to continue in MIT Sandbox in the Fall. https://sandbox.mit.edu/

Apply now! https://docs.google.com/forms/d/e/1FAIpQLScf0g2xfbf70xXkyp7DQx2TgHyH1yeOlaBuGAjvSA1tUvA_zw/viewform
Want to learn more?
• Visit DHIVE website https://sandbox.mit.edu/dhive
• Register for Info Session on Apr 1, 12 pm https://www.eventbrite.com/e/290594404687
• Email [email protected] with your questions

MIT DHIVE - Summer 2022 Application Complete this form to apply to the MIT DHIVE Summer program (June 6 - July 29, 2022), focused on entrepreneurial solutions related to one or more of the following tracks: - LCL: Long Covid & Lyme - https://sandbox.mit.edu/dhive-long-covid-lyme - DS: Down syndrome - https://sandbox.mit.edu/dhive-down...