LEND Boston

LEND Resource Roundup: Lifespan Down Syndrome Advocacy & Support 💛💙
Navigating diagnosis, educational options, and transition planning for individuals with Down syndrome requires up-to-date resources and a strong, connected community 🌟. Having access to specialized lifetime support makes all the difference for individuals, families, healthcare providers, and educators alike 🤝✨.

That’s why we are highlighting the Massachusetts Down Syndrome Congress (MDSC) in this week’s roundup! 📣

👉 Check it out here: https://mdsc.org/ 📲

What it does:
The Massachusetts Down Syndrome Congress (MDSC) is a statewide organization dedicated to ensuring individuals with Down syndrome are valued, included, and given every opportunity to reach their full potential 🌈. Serving over 7,000 members across Massachusetts, MDSC provides lifespan support, specialized resource centers, peer programs, and advocacy from birth through adulthood 💙.

Why it’s a helpful tool:
👶 First Call & Expectant Parent Programs: Offers compassionate, confidential support, medical information, and peer connections for new and expectant parents.

🏫 Centers of Excellence: Features specialized initiatives including the Center on Inclusive Education for schools, the Your Next Star Employment Center for adult career paths, and a dedicated Legislative Action Center.

📚 Comprehensive Resource Library & Community: Connects families and professionals to regional medical clinics, localized support groups, annual events (like the Buddy Walk), and practical educational toolkits.

Take a few minutes to explore the site or share it with a family, educator, or healthcare provider supporting individuals with Down syndrome! 📣✨

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We are excited to share a new article in the Developmental Disabilities Network Journal written by our current and former fellows and faculty! "The Legacy, Importance, & Impact of LEND: Evidence and Personal Stories"

https://digitalcommons.usu.edu/ddnj/vol5/iss2/26/

It was a big week for the LEND-ICI-DDM family…First, Yourlanda Johnson & Dr. Fogler celebrated our friend and colleague David Hoff’s impending retirement from the ICI (center in the Hawaiian shirt flanked by Dr. Fogler, previous LEND Director Dr. David Helm, ICI media guru David Temelini, and one of our first ICI Directors and Dean of SGISD at UMass Boston Bill Kiernan).

Second, congratulations to our own Training Director Angela Lombardo and Division of Developmental Medicine colleague Dr. Susan Faja on being presented with the Arnold Disability Advocacy Award at the 3rd Annual Disability Health Equity Symposium. (As Angela was in Orlando for the DSMIG Symposium and National Down Syndrome Congress Annual Convention, her supervisor Katherine Day accepted the award on her behalf). Our friend and colleague Jonathan McCurry was also a nominee for this award.

In addition to a superb keynote by Cara Coleman, MD, MPH and a powerful lived experience panel on Inclusion, Equity, & Advocacy, Dr. Fogler moderated the conference’s closing panel on the topic of Care Coordination, Delivery, and Educational Considerations for Children and Youth with Special Healthcare Needs with nursing faculty Heather Engholm, LEND alumnus and Chief of Complex Care at Boston Children’s Hospital Dr. Jay Berry, and educational specialist Catherine Ullman Shade.

It was nice to see so many dedicated colleagues in attendance, including recent LEND graduate Nicola Ciccomancini and Dr. Jonathan Greenwood, Senior Director of the Physical Therapy Dept at Boston Children’s Hospital. Thanks to Drs. Jen Arnold and Nora Renthal for holding this deeply meaningful and inspiring conference!

Check out this article from Rewarding Work about being a caregiver, featuring quotes from Gyasi Burks-Abbott!

"I Have Caregiver Experience but Not Across the Spectrum" | Rewarding Work Connect with qualified caregivers or find care work in MA, CT & KS. Free for job seekers, flexible plans for employers. Direct care matches.

📌 LEND Resource Roundup: Quick Public Benefits Check 📌

Navigating public benefits can often feel like a full-time job, especially for families managing complex care needs. Between endless paperwork and confusing eligibility rules, it's easy to feel overwhelmed or miss out on available support.

That’s why we are highlighting MyFriendBen in this week’s roundup!

👉 Check it out here: https://www.myfriendben.org/

What it does:
MyFriendBen is a free, anonymous tool that takes the guesswork out of public benefits. In just about 6 minutes, families can see a clear picture of what economic support, food or utility assistance, and community programs they might actually qualify for.

Why it’s a helpful tool:

✅Super Fast: The intake screener takes less than 10 minutes.

✅No Personal Info Required: It’s totally anonymous and judgment-free.

✅Shows the Cash Value: It estimates the dollar value of the programs before you spend hours filling out official applications.

(Note: MyFriendBen currently serves families in Colorado, Illinois, Massachusetts, North Carolina, Washington, and Texas, with more states on the way!)

Take a few minutes to look it over or share it with a family or provider who could use a simpler way to find extra support.

☀️ LEND Resource Round-Up: 2026 Summer Community & Recreation Guide ☀️

Finding accessible, engaging summer programming can be a challenge for neurodivergent individuals and their families. This month's Resource Round-Up highlights the BMC Autism Program Summer Resource Guide 2026, a comprehensive toolkit created by the Autism Program at Boston Medical Center.

📋 Inside the Guide:

☑️ Inclusive Summer Camps

☑️ Adaptive Sports Programs

☑️ Family-Friendly Activities

☑️ Adult Resources

📥 Download and Share the Resource: 👉https://www.bmc.org/sites/default/files/Patient_Care/Specialty_Care/Pediatrics%20-%20Autism/resources/BMC-Autism-Program-Summer-Guide-2026.pdf

The Autism Program at Boston Medical Center is hosting its virtual conference, "AUTISM ACROSS THE LIFESPAN: Deepening Your Professional Competency".
Join for a full day of multidisciplinary insights, practical strategies, and lived expertise designed to strengthen your professional practice.

📅 Event Details:
Date & Time: August 5th, 2026 | 9:30 AM – 3:00 PM EST
Format: Fully Virtual
CEUs Offered: Available per session for Social Work, Nursing, and BACB ACE CE.
Key Topics: Autism-friendly practices, navigating a new diagnosis, supporting transition-age youth, and adult independence.
Special Highlight: A dedicated panel discussion on Lived Experiences with Autistic Individuals.

Secure your spot today by scanning the QR code or by clicking the link below! 👇
👉 https://form.jotform.com/251243924570051

For questions, contact [email protected].
Visit www.bmc.org/autism to learn more about the BMC Autism Program.

We are proud to introduce our very first LEND Alumni Spotlight! 🌟

This month, we are proud to spotlight two amazing individuals whose partnership exemplifies the LEND mission: Melissa Levin, MSW, LICSW, a former Boston Children’s Hospital LEND fellow, and Naomi Dogan, PhD, licensed psychologist, certified neurodiversity life coach, self-advocate, and LEND community partner.

Their connection began with the Neuro-Inclusive Oncology Care and Empowerment program at Dana-Farber Cancer Institute and has evolved from a clinician-client relationship into a powerful collaboration. Together, they are working to reinvent how the healthcare system views and treats neurodivergent individuals, advising providers to move away from being “autism-adjacent” to become true autism allies.

Melissa and Naomi’s collaboration is a powerful example of forging alliances between providers and those with lived experience to improve the lives of individuals with disabilities across the entire lifespan.

Read the full story to hear more from Melissa and Naomi!

☀LEND Alumni Spotlight ☀

The LEND program has always been about strengthening the advocacy skills necessary to challenge and eliminate systemic inequities.

For our first alumni spotlight, we are proud to showcase Melissa Levin, MSW, LICSW, and Naomi Dogan, PhD. Their connection evolved from a clinician-client relationship into a powerful collaboration aimed at reinventing how the healthcare system views and treats neurodivergent individuals.

As Naomi noted, this means moving from individual accommodations to Universal Design so providers become "autism allies" looking at the whole picture.

Read the full article to hear more from Melissa and Naomi!

Don't forget to join us on LinkedIn! 💼✨

If you haven't already, take a quick second to follow our official LinkedIn page. It’s a great place to connect with the LEND Boston network, catch alumni spotlights, and share professional resources.

Follow us here: https://www.linkedin.com/company/112589786 📲

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