Mantle Cell Lymphoma Alliance - MCLA

08/05/2026

More people will hear the words “mantle cell lymphoma” in the years ahead. We want them to hear “you’re not alone” right after. 💛

A new study projects MCL diagnoses in the U.S. will rise about 6% by 2032 — with sharper increases among women and adults under 65. More patients. More families searching for answers.

MCLA exists so no one faces MCL alone. The community we build today is what those future patients will lean on tomorrow — and your voice helps shape it.

👉 Join MCLA Voices — our patient and caregiver network. https://mantlecellalliance.org/voices/

📬 Or subscribe to our newsletter to stay connected. https://mantlecellalliance.org/newsletters/

MantleCellLymphoma

MCLA Voices is a community of patients, caregivers, and family members who help shape the future of the Mantle Cell Lymphoma Alliance. Your experience matters.

08/03/2026

🚨 Milestone alert: The Living Rare Study just hit 3,000 participants 🚨
Every voice in this study helps advance research, strengthen advocacy, and build a better future for the rare disease community — including our mantle cell lymphoma family.
✅ Already enrolled? Watch your inbox for your yearly update reminder — those annual check-ins are what make the data powerful over time.
🙋 Not enrolled yet? Help push us to 4,000. If you or a loved one is living with a rare or undiagnosed disease, your experience matters.
MCL is rare. Your story is data. Your data is hope.
👉 Join today at livingrarestudy.org
National Organization for Rare Disorders, Inc. (NORD)

08/03/2026

The latest edition of the MCLA Newsletter is here!
Don’t miss updates on our new Scientific Advisory Board, our peer-to-peer mentoring partnership with Imerman Angels, the latest MCL research, and Kelly Dewitt’s MCL journey.

Read it here: https://mantlecellalliance.org/newsletters/2026-07/

08/01/2026

New Medicaid work requirements take effect January 1, 2027, requiring 80 hours a month of work, volunteering, or job training in 40 expansion states plus D.C.

For the MCL community, there is a helpful starting point: mantle cell lymphoma is on the Social Security Administration’s Compassionate Allowances list, which can fast-track the medical review for SSDI. An approved SSDI claim generally documents disability for the Medicaid exemption. Approval isn’t guaranteed — applicants still need to meet work-credit and other non-medical requirements, and outcomes vary case by case. Patients who are “medically frail” may also qualify for an exemption through their state, though definitions differ by state.

The common thread: none of this is automatic. Patients and caregivers should apply early, keep documentation current, and stay in touch with their state Medicaid office.
National Organization for Rare Disorders, Inc. (NORD)CEO Pamela Gavin walked through the practical steps to take now, before the rules take effect. Worth reading and sharing with anyone in treatment or caring for a loved one with MCL.

Read the Q&A: https://www.cnbc.com/2026/07/31/new-medicaid-work-rules-insurance-coverage-rare-disease-patients.html

Learn about SSA Compassionate Allowances: https://www.ssa.gov/compassionateallowances/

NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases

07/30/2026

Meet the people behind MCLA

Today we're introducing our very first volunteer — Blair Helsing — and it happens to be his birthday tomorrow. Blair is celebrating by asking his community to support MCLA through a birthday fundraiser, and we couldn't think of a better way to say thank you than to share his story.

Benefiting from the support of his wife, family, and friends — and the medical team at Kaiser Permanente — Blair is living the life he chooses, 11 years after his MCL diagnosis and remission. Treatments prescribed in the clinical trial he chose led to the outcome he hoped for.

Retired from a career in IT, Blair volunteers at four nonprofits including MCLA, and continues his music career as a percussionist and composer. He also writes a Substack about journalism and news media.

Blair is a member of MCLA's social media team and is behind many of the posts you see from us — so if something you've read here has informed, moved, or connected you, there's a good chance Blair helped bring it to you.

There is much more to be done to further the advances in patient and survivor support and in the research for treating MCL. That's what has led people like Blair to step forward at MCLA.

Wish Blair a happy birthday — and if you're moved to, join us in supporting his fundraiser: https://givebutter.com/mcla-champions/blairhelsing

07/29/2026

With The ASCO Post – I just got recognized as one of their top fans! 🎉

07/28/2026

Did You Know?

MCL comes with its own language — and you don’t have to learn it all at once.

In the first weeks after a mantle cell lymphoma diagnosis, you’ll start hearing words like Ki-67, TP53, blastoid, pleomorphic, MIPI, MRD, BTK inhibitor, and CAR-T. It can feel like a foreign language on top of everything else you’re processing.

That’s exactly why we built a plain-English MCL glossary on our website — written for patients and caregivers, not for medical journals.

It’s Step 4 of our Newly Diagnosed Roadmap: Learn the Language of MCL.

A few terms from the glossary:
• Ki-67 — a marker that estimates how quickly lymphoma cells are growing.
• TP53 mutation — a high-risk feature in MCL that may influence treatment decisions.
• BTK inhibitor — a targeted therapy commonly used in MCL (Brukinsa, Calquence, Jaypirca).
• MRD (Minimal Residual Disease) — a very small amount of lymphoma that may remain after treatment, only detectable with sensitive tests.
• Watch and Wait — a monitoring strategy used for some slower-growing MCL.

Bookmark it, share it with a newly diagnosed friend, or bring it to your next appointment.

👉 Read the glossary: https://mantlecellalliance.org/understanding-mcl/glossary/

07/26/2026

Our friends at Blood Cancer United have created this great resource.

07/26/2026

📅 A new week, and there’s something to look forward to every day!

Here’s what’s coming up this week from the Mantle Cell Lymphoma Alliance:

📋 Tuesday: Did You Know?
Easy-to-understand information about Mantle Cell Lymphoma—because knowledge empowers patients and care partners.

✨ Wednesday: A special announcement!
We’re sharing some exciting news that we can’t wait to tell you about. Be sure to check back!

💙 Thursday: Meet the People Behind MCLA
Meet Blair Helsing, an MCL survivor and MCLA’s very first volunteer. His story is one of resilience, hope, and the power of community.

Whether you’re living with MCL, caring for someone who is, or simply want to support our mission, we’re glad you’re here. Follow along this week—we’re just getting started.



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