APBD Research Funding Opportunity Through UPenn’s MDBR Program

The APBD Research Foundation in partnership with the Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2023 Million Dollar Bike Ride Pilot Grant Program. This program provides a one‐year grant to support research related to APBD. Two grants for $50,000 each will be awarded.

The primary focus for this grant opportunity is the identification of a biomarker that could be used to demonstrate effectiveness of a therapeutic for APBD.

Investigations related to the development of approaches that will prevent polyglucosan body accumulation or facilitate its removal from the central and peripheral nervous systems will also be considered.

Letter of Interest (LOI) Applications are Due Friday, September 15, 2023, by 8pm EST. For more details about how to submit your LOI and the application process, visit the ODC website.

This Request for Applications (RFA) is open to the international research community. All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA. 

Michael Canmann Joins the APBD Research Foundation's Board of Directors

The APBD Research Foundation is thrilled to announce the addition of Michael Canmann to the Board of Directors. “Michael brings extensive business development experience and his personal battle with APBD to our mission. Having him join us at this point in time is critical as we work to increase our reach and impact and bring treatment options to those with APBD and allied diseases,” said Jeff Levenson, co-president.

Dante Labs Joins Foundation’s Corporate Partners Program

We are excited to announce that Dante Labs has joined our Corporate Partners Program! Dante Labs is a leading global genomics and precision medicine company working to deliver better healthcare and save lives with a more personalized approach to health. As a corporate partner, the company demonstrates its shared commitment and support of our mission-critical programs.

To learn more about our Corporate Partners program, please get in touch with Natacha Pires at natacha@apbdrf.org.

Meet Noelle Lynch, Our New Genetic Counseling Intern!

We are pleased to introduce you to Noelle Lynch, the newest addition to our team. Noelle is a genetic counseling graduate student from Columbia University. She was inspired to enter the field by a desire to give sensitive care to patients receiving difficult news and experiencing long diagnostic odysseys.



Noelle brings her compassionate communication and creative writing skills to raise awareness of APBD through patient and caregiver stories. She will also author materials that will help community members better understand APBD genetics, clinical trials, and scientific discoveries. Welcome Noelle!

Planned Giving - Impact Now and Your Legacy

Whatever your stage in life, planned giving can benefit you and your loved ones while helping to ensure that vital research for treatments and cures for APBD continues. Some planned gifts have an impact now, some after your lifetime. Many offer tax savings, and some even provide you with income for life.

An estate plan ensures your wishes are honored in regards to who will pay your final expenses and who will receive your assets. Assets might include financial accounts, stocks, life insurance policies, personal property and real estate. Making a legacy gift to the APBD Research Foundation has the following benefits:



• Perpetuate your values. Your will or trust allows you to create a bequest that reflects the values you hold dear.
• Retain control of your assets during your lifetime. You can modify your gift if your circumstances change.
• Take advantage of tax laws that help preserve your estate assets. A well-designed plan can result in your estate paying less tax, allowing you to leave more for your beneficiaries.

Learn more about our Planned Giving Program and Benefits…

Upcoming Events

From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals which connect our community members and deepen the understanding of how APBD impacts lives.

These events offer peer support, opportunities to hear from health experts and Foundation leaders, and the chance to raise funds for APBD research.

Caregiver / Family Chat

September 15, 2023, 7:30pm ET | 4:30pm PT

October 12, 2023, 7:30pm ET | 4:30pm PT

This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at linda@apbdrf.org.

Patient Chat

September 27, 2023, 8:00pm ET | 5:00pm PT

October 25, 2023, 8:00pm ET | 5:00pm PT

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more and register for this event, email Harriet at harriet@apbdrf.org.

We provide this FREE monthly newsletter resource to all patients.

This program is made possible by contributions to the APBD Research Foundation from donors like you.

Thank You!

Connect with Us

info@apbdrf.org | 646.580.5610 | apbdrf.org

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