It’s that time again! It’s been almost 2 years since the last Family and Scientific Conference in Florida. That conference had 180 attendants, from 10 different countries and 21 US states. Seventy of those who attended were BBSOAS patients, showing just how important this meeting is for them as well as for all the family members.
Foundation’s Scientific Research Goals
The NR2F1 Foundation has been growing since the last conference, and has taken on and committed to funding more scientific research over the next three years. This past January the board members met with some of the foundation’s scientific advisors and created a 3-year Research Roadmap along with a list of initiatives. This is a momentous goal which will entail fundraising to pay for researchers, a new mouse model, and discovery of BBSOAS biomarkers.
Cost of Hosting the Family and Scientific Conference
The Family and Scientific Conference will be held again at the Embassy Suites by Hilton in Lake Buena Vista, Florida, on April 3 – 5. Hosting a conference of this size and scope carries a cost of around $33,000. If this all comes from the pockets of the foundation, those are funds that will not go to research. So many breakthroughs have happened due to the increased amount of research, all of which improves the lives and future outcomes for those who live with BBSOAS.
We are looking for companies that are interested in promoting their business for a cause they can feel good about, and also be assured that all money they donate will go entirely to the foundation and the costs of this event. There are multiple levels of sponsorship, and a choice of one-time or monthly donations.
Reasons for the conference
Conferences like this are very special and important. For families that have a child or other family member who has received a diagnosis of BBSOAS, they often feel very alone and overwhelmed, due to the rarity of the condition. Being able to meet with and talk to others in a similar situation helps families forge new friendships and support each other, no matter whey they may live throughout the world.
This year’s conference has a two-pronged purpose. One is for researchers and doctors to meet together to share research findings, and the second is for BBSOAS families to connect with each other.
Help us find sponsors
If all our friends and supporters would talk with the companies they work for, as well as other business owners they know, about being a sponsor and promoting their business at the conference, we would be able to easily raise the funds to cover the cost of hosting it. Click HERE for more information about becoming a sponsor, along with a description of what is included with each level or sponsorship. We need donations from individuals as well, who have the option to specify an individual to donate in honor of. We only have a few short months before April 3, 2024. All donations can be made on our donation page.
Carlie is the Vice President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.
With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.
Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.