NBIA NEWS & INFORMATION

NORD webinar focuses on the power of advocacy

December 2021

A November webinar our organization held featuring two speakers from the National Organization for Rare Disorders (NORD) provided motivational examples of how NBIA families can use their passion and personal stories to promote awareness and advocate for NBIA disorders.

Debbie Drell 

Debbie Drell

Kristen Angell 

Kristen Angell

Debbie Drell, NORD’s director of membership, and Kristen Angell, NORD’s associate director of advocacy, emphasized the power of individuals telling their unique story with passion and originality. “Your story is the most valuable tool you have to be an effective advocate,” Angell said at the webinar entitled, “How Can Rare Families Fight Back?”

Angell and Drell urged families be willing to share their stories and to take part in Rare Disease Day 2022 on Feb. 28. As an example of the impact of compelling storytelling, the NBIA Disorders Association video for NORD Rare Disease Day 2021 spotlighted our families and attracted over 17,000 views. It won an award from NORD for best video and resulted in NORD providing speakers for the webinar.

Other ways the webinar speakers said that families can fight back against rare disorders and have an impact include:

  • Meeting with legislators to raise their awareness, share information and support legislative proposals
  • Bringing awareness to your local community. Fundraisers and stories in the local media are just two ways to do this.
  • Signing up for the Rare Disease Network® (RAN), the nation’s leading advocacy network for rare disorders
  • Joining discussion groups
  • Taking part in Rare Disease Day and use the social media tags, #showyourstripes  #RareDiseaseDay
  • Being creative
 

The Colosseum in Rome Lights Up for Rare

One creative awareness-raising project, Light Up for Rare, involves asking monuments and public buildings around the world to, literally, shine a spotlight on rare disorders. The NORD speakers said they were proud during Rare Disease Day last year to get the Empire State Building lit up, as well as the National Institutes of Health. Other famous sites that have participated include the Colosseum in Rome, the Leaning Tower of Pisa in Italy, the Eiffel Tower in Paris and Niagara Falls in New York. In addition, many of the world’s tallest buildings were lit up last year, they said.

They mentioned it was virtually impossible to get the White House to light up for a cause, but an NBIA parent on the webinar, Paul Stronski, of Arlington, Virginia, said he would encourage his White House contacts and ask.  Stronski also said he would try to get the Carnegie Endowment on Massachusetts Avenue involved as well.

The webinar also included ideas on how to promote policy and advocacy on local, state, and federal levels, including campaigns organized and supported by NORD.  

The Rare Action Network (www.rareaction.org) is a powerful resource, the speakers said. It offers discussion forums, state report cards outlining state-based policies, action centers for each state, educational tools and training workshops. Joining RAN is an easy way to connect with others and receive alerts about important events and campaigns that affect rare disease families in your area. It even offers coloring pages you can download for the kids.

In 2022, RAN will relaunch their state ambassador program, selecting and training volunteers to become leaders for establishing and building networks within their state.

Rare Disease Day offers families a perfect time to get involved and raise awareness of NBIA disorders. The global reach of the platform grows larger year by year. Visit www.rarediseaseday.org and start preparing to have an impact.

You can view the webinar for more information on ways to be an advocate for NBIA disorders. WEBINAR

 

 

NBIA Disorders Association celebrates 25 years

25th AnniversaryJune 2021

This is a year of celebration for the NBIA Disorders Associations as we mark 25 years of service to the NBIA community.

We invite everyone to attend a virtual birthday party to be held on Sept. 26 at 1 p.m. Pacific time, 4 p.m. Eastern. It will be a quick 30 minutes with appearances from key individuals and other surprises. A Zoom link for the party will be sent out to everyone on our newsletter mailing list via email and posted online in September.

Leading up to this celebration we have our 25th Anniversary Tributes underway that everyone can participate in and share with those who have made a difference in their lives. Check out our Celebration site where you can create and send a tribute to anyone: researchers, doctors, teachers, caregivers, NBIA families and individuals. Let them know how they have helped you on your journey or been an inspiration in your life. 

You can also make a donation or become a Partner in Hope as a monthly donor and help us achieve our goals and continue our mission of educating the public, providing support to families and funding research. Those making tributes and/or donations at $250 or above will be part of our 25th Anniversary Celebration Wall at either the bronze, silver, gold or platinum level.

Cheers to 25 years!

 

Team NBIA Disorders wins BPAN funding as deadline for letter of interest looms

Orphan Disease Centermdbr fundraisingJune 2021

Once again, Team NBIA Disorders has qualified for the maximum matching grant to fund BPAN research through the Million Dollar Bike Ride organized by the University of Pennsylvania's Orphan Disease Center.

BPAN researchers who are considering making a research proposal have until 8 p.m. Eastern Time Sept. 16, 2021, to submit letters of interest.

This year’s Million Dollar Bike Ride on June 12 was the 8th annual and marked the second year the event was held virtually because of the COVID-19 pandemic. But that didn’t stop Team NBIA Disorders. For the fifth consecutive year, the team won the match — $30,000 this year — making a total of $66,366 available for BPAN research.


MDBR2021 1MDBR2021 2

Noah Rusch from Germany invited friends and family to ride their bikes to his home with a donation, and in turn, the family served them cold drinks and freshly baked pizza from their wood-fired oven. They received over 60 visitors bringing donations and raised over $3500 for the MDBR..


NBIA families and friends raised most of the funds in about two months, a record time frame. And for the second year, our sister organization in Germany, Hoffnungsbaum e. V., encouraged their families to help. They generously contributed $5,000 to our total.

Although UPenn's Orphan Disease Center will manage the grant, our organization is closely involved. We ensure that it matches our BPAN research priorities, and members of our Scientific & Medical Advisory Board who do not have any conflicts of interest will review the submissions, along with other ad hoc reviewers. At the completion of the grant award, we will get a report on the research to distribute to our NBIA community.

We have notified scientists in our research database about this opportunity to compete for the BPAN grant. They can visit here to submit a letter of interest. Guidelines for the request for applications (RFA) form can be found here. Those proposals will be due Oct. 18, 2021, no later than 8 p.m. (EST). Full application documents are to be uploaded on UPenn’s Orphan Disease Center website, by invitation only after submitting a letter of interest.

 

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