Ara Parseghian Medical Research Fund

04/23/2026

☘️ Notre Dame Day shows us what’s possible when a community comes together

Because of you - we continue to
• fund critical research
• expand awareness
• inspire hope

This is just a number
It’s more time, more answers and more moments that matter

We are so grateful - hallelujah 🫶🏻✨

04/23/2026

04/22/2026

WOW 🤩 Thank you Mari Cutler for being an inspiration and for raising awareness about NPC our our need for research and a cure!

As the two finalists in the seventh-grade Caritas project, Boutros Gemayel ’31 and Mari Cutler ’31 delivered presentations on their selected charities in front of the Middle and Upper Schools at Convocation. Now, the community will vote to determine which of their charities will receive a donation from Gilmour. Read more about their charities here: https://www.gilmour.org/News-Detail?pk=1618487

04/06/2026

⭐Every year we come together for Notre Dame Day - an opportunity to "Power Amazing Things".

WHY?

👩‍🔬We are proud to support researchers across the globe who are working tirelessly to find treatments and ultimately a cure, for Niemann-Pick Type C. Every dollar raised fuels critical research, bringing us closer to answers this community so urgently needs.

The reality is simple: the more we raise, the more we can fund. And the more we fund, the faster we move toward progress.

🎉This year, we have an incredible opportunity—a $400,000 match. That means together, we could generate up to $800,000 for research.

That’s not just a number.
⌛That’s time.
💜That’s hope.
📸That’s more moments for families who deserve more memories with the people they love.

The NPC community is counting on us. And they are worth showing up for.

Let’s make it count. ☘️ Donate today to help us reach our goal!
https://notredameday.nd.edu/organizations/ara-parseghian-medical-research-fund

03/23/2026

☘️ Note Dame Day is off to a great (early) start!

We are once again rallying supporters around our mission of "inspiring hope through research and awareness" for our largest fundraiser of the year

👉 Visit our page. join us and create your own team to help us move the mission closer to the goal - "a goal for life"
https://notredameday.nd.edu/organizations/ara-parseghian-medical-research-fund

03/19/2026

Notre Dame Day is HERE ☘️

Today marks the start of something bigger than a day—it’s a chance to come together and change lives.

💜For those who have been on this journey with us… you already know the heart behind our mission. You’ve seen the impact, felt the hope, and helped push research forward for families facing Niemann-Pick Type C.

And if you’re new here 👋 welcome. We’re so glad you found us.

Our foundation exists for one reason:
to bring hope, answers, and progress to children and families battling this rare and devastating disease.

Notre Dame Day is one of the most powerful opportunities we have all year to make that mission move faster.

💡 Every gift matters
💡 Every share expands our reach
💡 Every person who joins us brings us closer to breakthroughs

This year, we’ve set an ambitious goal—because the need is urgent, and the families we serve can’t wait.

The WHY is simple:
Because every child deserves a future.
Because rare should never mean forgotten.
Because together, we can do more than we ever could alone.

If you’ve supported us before, thank you for believing.
If you’re just learning about us, this is your moment to be part of something meaningful.

👉 Join us. Give. Share. Be part of the impact.
https://notredameday.nd.edu/organizations/ara-parseghian-medical-research-fund

03/03/2026

02/27/2026

🦓Rare Disease Day - It is about the families who turn heartbreak into advocacy, researchers who refuse to give up and patients who inspire us with courage beyond words.

✨Together, we are stronger
Together, our light shines brighter
And together, we will continue to raise awareness and pursue answers for those who inspire us the most

Join us 💜🩷💚🩵

Every rare disease diagnosis carries a story. For some patients and families, the journey is swift. For many others, it’s years of unanswered questions, misdiagnoses, and uncertainty before finally finding clarity.

On , we stand with the rare disease community — honoring the strength and resiliency of patients, caregivers, advocates, and researchers who walk these journeys every day.

At the University of Notre Dame, that commitment goes beyond awareness. Through the Patient Advocacy Initiative and the Boler-Parseghian Center for Rare Diseases, we advance research, advocacy, and education to better serve those affected by rare diseases.

Join us on February 28 as we gather for our fourth annual lighting ceremony, when the Word of Life Mural (“Touchdown Jesus”) will shine in Rare Disease Day colors as a symbol of solidarity and hope: https://bit.ly/4tRUPEu

🩷🩵💚💜

🕖 7 pm
📍 Hesburgh Libraries

02/24/2026

💪This past weekend, strength met purpose.

David took on a world-record challenge with one goal in mind: to shine a light on the Niemann-Pick community and raise funds to advance research through APMRF.

🏆It was an ambitious goal and he achieved not one, not two but THREE records! David broke the 12 and 24 hour record which now makes him the first person to hold all three - the most pull ups in 8, 12, and 24 hours!

Beyond the physical endurance, what stood out most was the heart behind it. David leaned on the support of this community every step of the way, drawing energy from your encouragement and rallying behind families who face their own endurance challenge every day.

Because while a record may last hours, the fight against NPC continues daily.

💜We are incredibly grateful for the awareness David brought to our mission and the strength he demonstrated — not just physically, but in his commitment to our families.

Well done David 👏👏

02/23/2026

📢 A meaningful step forward for the NPC community.

https://www.berentx.com/news/adrabetadex-nda-accepted-priority-review-npc

Beren Therapeutics announced that the FDA has accepted its NDA for adrabetadex for the treatment of Niemann-Pick disease type C (NPC) and granted Priority Review. This is an important milestone for families affected by this devastating disease.

🔬Progress like this reflects years of research, persistence, and partnership across the rare disease community. We are grateful for companies like Beren who are committed to advancing potential therapies and helping move hope closer to reality for those living with NPC.

Momentum matters. And today, it feels tangible. 💜

10/28/2025

💜 Niemann-Pick Awareness Month may be coming to a close… but our fight is far from over.

Every day, families impacted by Niemann-Pick disease remind us why we can’t stop — why we won’t stop — until there’s a cure.

We come together to shine light, share stories, and spread hope, but our mission continues year-round.

You can help keep the momentum going:

🌟 Give to support critical research and treatments.
🏃‍♀️ Join one of our fundraisers and events throughout the year.
💌 Stay connected by joining our mailing list for updates and opportunities.
💬 Share your story to raise awareness and inspire others.

Together, we are stronger. Together, we bring hope. Together, we will find a cure. 💛💜

🔗 for more info visit https://linktr.ee/parseghianfund