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2019 Top-Rated Nonprofit

NBIA Disorders Association

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Nonprofit Overview

Causes: Alliances & Advocacy, Arts & Culture, Health, Health Support

Mission: In our drive to find a cure for NBIA disorders, we provide support to families, educate the public and accelerate research with collaborators from around the world.

Results: Since our founding, we have been a supporter to each major discovery made in the quest for treatments and cures for these devastating ultra-rare disorders.

Target demographics: families impacted by NBIA disorders

Geographic areas served: the United States and collaborate with partners worldwide

Programs: family support, and grants to researchers seeking treatments and cures. Over time, more than $2M has been granted to researchers around the world. Every two years, a family conference is held to bring together families and researchers. The Tenth International Family Conference was held May 30 to June 2, 2019, in Charleston, SC. It was the largest to date with 285 attendees from 10 countries. The association maintains a web presence at www.NBIAdisorders.org which provides a database of current and accurate information on NBIA. The association also moderates a group forum, has a networking program and a social media director, has a Facebook page, is on Twitter and Linked-in, and has multiple videos posted on an NBIA You-Tube channel. These resources provide the latest information on the subject.

Community Stories

11 Stories from Volunteers, Donors & Supporters

2

Volunteer

Rating: 5

I have been privileged to be a part of NBIA from the very beginning. My sister’s only daughter Kimberly was diagnosed when very young with this devastating genetic condition. Her mother was ready to move heaven and earth to help her daughter. And she did! Patty Wood, my baby sister ,started this organization over 20 years ago. She and Dr. Hayflick were the pioneers who began the search for a cure. I have attended all 10 of the international conferences. It has been an honor to meet the bravest parents, the most kind hearted Doctors and researchers, the sweetest children in the world. The conferences are a source of joy and comfort to all who attend. Always praying for a cure

2 Jennifer Ayala S.

Client Served

Rating: 5

After 10 long years of testing to find a diagnosis for our daughter, Sophia, we were devastated at having received the heavy news that she had a regressive neurological condition that was expected to worsen perhaps in early adolescents or in her early 20's. With no known cure or treatment options and having learned that her condition was only discovered in 2012, there was not a lot of information out there on the internet and other than our neurologist, none of our other specialist in the Texas Medical Center had ever heard of NBIA- BPAN (which is what Sophia was diagnosed with). Our genetic counselor quickly put us in touch with NBIA Disorders Association and told me that they comprised of a group of families who all had loved ones with various NBIA disorders. We connected with the group and attended their bi-annual medical conference for families that spring. We were so looking forward to meeting other families and hopefully learning about their experiences with this disorder. Not only did we meet other families at the conference, but we were able to meet in person with researchers and genetic counselors who are actively working on understanding the disease for the purpose of creating treatment options and cures for NBIA disorders. We were able to leave blood samples with the researchers so they could add our DNA profile to their databank. This is part of what NBIA Disorders Association facilitates and organizes.
I have to say that having attended the first and second conference has forever changed our lives. We were able to connect with other families who are living in our shoes and know first hand what we are dealing with and what we are up against. These families have been true warriors not only raising their special needs children and adult children, but raising funds and awareness for research through NBIA Disorders Association. We have learned so much in such a short amount of time just from meeting the other families. A lot of what we see in our daughter now makes sense to us now that we understands the, "mechanics" behind the scene neurologically speaking.
NBIA Disorders Association also presented valuable and desperately needed information and research findings at the conferences. We learned at the first conference how many researchers around the world are collaborating and working intensively to solve the mystery behind NBIA disorders and find treatments or a cure.
Overall, what I have learned about NBIA Disorders Association is that they are a resilient and determined assemblage of families who support one another and have a common goal...to responsibly find treatment options and a cure for all NBIA disorders and share their knowledge and research findings with the larger scientific community and others who are interested in learning more about NBIA.

Jimmy N.2

General Member of the Public

Rating: 5

My daughter suffers with nbia, this organisation tries very hard and is always promoting the research that has happened , I live in the uk but managed to listen to and even watch videos of the last meetings keeping me up to date with the progress to find a cure for this disease,really helpful and return messages super quickly
Thanks nbia disorders association

2 Mandy McCarty H.

Client Served

Rating: 5

NBIA Disorders Association was an invaluable resource for our family when our two girls were diagnosed with PKAN in 2009. For years they assisted our neurologist with the treatment plan for our children and were available for consult when needed. When our youngest daughter passed away, we donated her brain to further research, as well as all medical records for both girls. We are so grateful to know that our girls lives were helped because of the the researchers at NBIA and that they continue to research with an urgency to help other children.

2

Volunteer

Rating: 5

NBIA has been a tremendous nonprofit for our two adult children who have NBIA/MPAN. The reason being is that they provide for us a good source of support and resources as we go on this journey together.

2 Merri M.1

Client Served

Rating: 5

Our daughter, who was only 20 months old at the time, was given a diagnosis of BPAN two years ago.Being told that your child has an ultra-rare, neurological degenerative disorder is very isolating. Being told that the condition is so rare, the doctors didn't have much information on it was devastating. Then we were told to contact the NBIA disorders association and it made us feel like we were not alone and that there are other families facing similar struggles and hardships. The NBIA disorders association has been a great tool for our family to contact with other families, contact with specialist and keep up to date on the latest research and information available. I am thankful such an organization exists.

2

General Member of the Public

Rating: 5

Our granddaughter was diagnosed just before she was 2 yrs old with BPAN. Luckily both sets of her grandparents and her parents got to attend the conference. Wonderful to meet people, some from around the world, and feel so welcome. We met adults who finally found out their diagnosis. Our granddaughter Dahlia Wildvank is so far the youngest diagnosed. We learned so much from the doctors who were there. They help with ideas for fundraising. The research and medical tests are so important. The support from members continues after the conference. Very grateful for this Association. from Amber's review" NBIA Disorders Association hosts a NBIA Family Conference every two years, which gives a chance for our families to come together from across the globe and band together for our children. At the conference we are updated on the latest research being done, as well as things that may be on the horizon. We attend sessions that are unique to our individual daily struggles so we can obtain information and support from fellow families. At the conference, you feel at home, even though you may have traveled across the globe.

2

Client Served

Rating: 5

Our son Elijah was diagnosed at the age of 19 with BPAN. We had spent most of his life searching for a reason for his developmental delays and seizures. We were given diagnoses of autism, cerebral palsy, PDDNOS. Finally after new genetic testing we were given the correct diagnosis, but the outcome of this disease was extremely devastating. We found The NBIA and the wonderful doctors and researchers that have been working on finding a cure for this and other genetic disorders and they have given us hope and helped us find other families that are also dealing with this disease. Please know that a donation to the NBIA is bringing a cure for these illnesses closer everyday, and that we are thankful for.

2

Board Member

Rating: 5

We spent 8 years searching for a diagnosis for my daughter's condition. We were devastated when we got the news that her condition was untreatable and progressive. The physicians recommended that we contact NBIA Disorders Association, the family support group and attend the upcoming conference.

The NBIA Disorders Association helped us connect with other families that had been in our situation. The Association shared the research with us, and showed us that there are many people throughout the world working on this problem.

The NBIA Disorders Association has created a community and funded research which has led to discoveries. It partners with other rare disease organizations throughout the world. It has developed an incredible network of volunteers, researchers and physicians. It is constantly putting together grants for new research. It tracks the progress of all the research taking place and makes that information freely available to families and researchers.

After a few years of enjoying the information and community that the NBIA Disorders Association makes available, I was invited to join the Board of Directors. It has been eye opening to see just how considerate, generous, and driven the organization is. It has been a pleasure to serve with them.

The NBIA Disorders Association gave us hope and connection and opportunities to make contributions to help in finding cures and treatment for my daughter's disease. I have been blessed to be a part of it.

2 Amber D.4

Donor

Rating: 5

NBIA Disorders Association has been a godsend to our family. Our daughter Sydney was diagnosed with BPAN, one of the 11 NBIA Disorders, in January of 2016. We were devastated. After coming across the support system that NBIA Disorders Association offers were were made to feel welcome, as well as connected to a community of those that were walking in our shoes.

NBIA Disorders Association partners with researchers all over the world to be sure that new and innovative research practices are being offered to our community. They fund grants to researchers that are highly respected in their fields to get as many minds on NBIA Disorders as possible. With BPAN, there are no treatments, and there's no cure. I fully trust the team at NBIA Disorders Association to pave the way for a brighter future for my child and those that follow.

NBIA Disorders Association hosts a NBIA Family Conference every two years, which gives a chance for our families to come together from across the globe and band together for our children. At the conference we are updated on the latest research being done, as well as things that may be on the horizon. We attend sessions that are unique to our individual daily struggles so we can obtain information and support from fellow families. At the conference, you feel at home, even though you may have traveled across the globe.

Being a part of NBIA Disorders Association makes you feel as though you are truly not alone on this journey that makes you feel like you are a lone survivor on an island.

The Denton Family
Houston, Texas

3

Volunteer

Rating: 5

My daughter was diagnosed with this devastating disorder 5 years ago. She is now completely dependent in all aspects of daily living.

NBIA is a rare genetic disorder that slowly and sometimes not so slowly takes control of your body. There is no treatment or cure.

NBIA Disorders Assoc. is helping raise awareness, connecting families and researchers until a cure can be found.

For more information about NBIA log on to www.NBIAdisorders.org and for more information about my daughters journey, log on to www.queenbeeworld.com