2025 Biorepository on the Road Graphics with the following dates and locations of collections: · Nashville, TN April 24-25th Westminster, CO June 14-15 St Louis, MO June 18-21 Phoenix, AZ June 27-28 Boston, MA July 10-11 Denver, CO July 18-19 Westminster, CO July 19-20 Windsor Locks, CT July 19-20 Philadelphia, PA Sept 24-27 Atlanta, GA Dec 4-5
Posted by Carlie Monnier | April 16, 2025
Get Involved in BBSOAS Research! 2025 Biorepository Dates & Locations

Have your child’s genetic sample used in research - 2025 dates and locations are now confirmed Over the past 2 years we have partnered with COMBINEDBrain to collect BBSOAS bio...

Elsa is sitting to the right of her digital poster abstract, smiling and wearing a button up shirt with a lanyard badge
Posted by Carlie Monnier | April 15, 2025
Update From Our BBSOAS Full-Time Researcher Dr. Wassmer

Dear BBSOAS Families, I wanted to share the latest developments of our work with you. In the last months, we have been busy in the Schaaf lab to establish at...

Drawing detailing the phases of bioinformatics from data sources to managing big data to problem solving to drug discovery or drug repurposing
Posted by Carlie Monnier | April 15, 2025
BBSOAS and Bioinformatics Analysis Discovery Update

BBSOAS and Bioinformatics Analysis Discovery Update In October 2024 the NR2F1 Foundation issued a grant to Dr Magdalena Laugsch at Heidelberg University to fund bioinformatics analysis and workflow establishment for...

Abigayle is standing in front of a scientific poster. She is smiling at the camera. She has long strawberry blonde hair and is wearing a black and white top and is wearing a badge with her name on it
Posted by Carlie Monnier | April 14, 2025
Meet Student Volunteer Abigayle Nafus

Meet our student volunteer – Abigayle Nafus  Where are you currently at Graduate School and what are you studying?   Kean University's Genetic Counseling Graduate Program   What motivated you to volunteer...

placed on the grass of a park there is a large banner in black in white hanging under a blue collapsible shade canopy surrounded by green, yellow, black and silver balloons. The banner words are in white and at the top it says Education, Advocacy, Research. Underneath in a white framed square in large white print it says walk for BBSOAS. Under that is the NR2F1 Foundation logo. to the left are logos of all the businesses that supported the walk.
Posted by Carlie Monnier | April 7, 2025
Inspire Change: Host Your Own Fundraiser for the NR2F1 Foundation 

Inspire Change: Host Your Own Fundraiser for the NR2F1 Foundation  Looking for a meaningful way to support the NR2F1 Foundation and make a difference in the lives of families affected...

Brian a young boy is sitting next to his sister also a young girl. brian has his arm around her and is smiling into the camera. she is looking at brian
Posted by Carlie Monnier | March 28, 2025
A Sibling’s Perspective on Rare Disease

A Sibling’s Perspective on Rare Disease  Brian Read joined the NR2F1 Foundation in early 2024, after applying to an advert on LinkedIn for a new Treasurer.  While Brian isn’t a...

Posted by Carlie Monnier | March 20, 2025
BBSOAS Grief, Resilience and Wonderment

We continue our theme of positivity and resilience and how our amazing BBSOAStrong overcome obstacles every day.  This month, Mom and NR2F1 Foundation board member, Ashlee Manjon-Stierstorfer shares about her...

Posted by Carlie Monnier | March 11, 2025
BBSOAS Research Fruit Fly Drug Repurposing

We know we reached out a lot in December with our fundraising efforts, but it paid off—and we couldn't have done it without you! Thanks to your support, we raised...

a 4 year old little girl wearing white overalls with a blue t-shirt and a crown of feathers on her head is smiling while sitting on a porch step next to white and yellow flowers
Posted by Carlie Monnier | January 9, 2025
“My 56-year-old Daughter Has Just Been Diagnosed”

One of the greatest privileges of leading the NR2F1 Foundation is the opportunity to connect with newly diagnosed families. Every time we welcome a new member, I offer a personal...

Posted by Carlie Monnier | October 29, 2024
NR2F1 Foundation Issues Bioinformatics Analysis Grant to Dr Laugsch

  Biomarkers are the key to discovering effective and meaningful treatment The NR2F1 Foundation issued a grant to Dr Magdalena Laugsch at Heidelberg University to fund bioinformatics analysis and workflow...

NR2F1 Foundation President Jen stands in front of a large banner for NORD that says reimagining what is possible
Posted by Carlie Monnier | October 28, 2024
NR2F1 President Heads to D.C. for 2024 NORD Conference

At the NORD Conference, Jen met with Terry Jo, Executive Director of COMBINEDBrain Thanks to a generous grant from NORD (National Organization for Rare Disease), Jen Coughlin, NR2F1 Foundation President...

Dr. Magdalena Laugsch with her students, Ayat and Michael
Posted by Carlie Monnier and Jennifer Coughlin | July 29, 2024
NR2F1 Foundation Awards Grant to Dr. Magdalena Laugsch

The NR2F1 Foundation issued a grant to Dr. Magdalena Laugsch to support her attending the The European Society of Human Genetics 2024 conference. Dr. Laugsch is the team leader for a lab at the...

Jennifer Coughlin
Posted by Jennifer Coughlin and NR2F1 Foundation | May 16, 2024
Meet Jennifer Coughlin, New NR2f1 Foundation Board President

Jennifer Coughlin has been appointed the new President of the Board of Directors of the NR2F1 Foundation. Carlie Monnier, who has held the position since the beginning, is taking over...

Posted by Carlie Monnier | May 10, 2024
2024 Family and Scientific Conference was a Resounding Success

Two years ago, the very first NR2F1 Family and Scientific Conference was held in Orlando, Florida. Last month, the second Conference took place in Orlando on April 3 – 5....

Dr. Magdalena and team
Posted by NR2F1 Foundation and Carlie Monnier | April 15, 2024
Grant Awarded to BBSOAS Researcher Dr. Magdalena Laugsch

Dr. Magdalena Laugsch, genetic researcher Dr. Magdalena Laugsch, of the Heidelberg Institute for Human Genetics, is a researcher in the field of genetics. She obtained her Ph.D. degree at the Institute...