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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

27 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

We knew that something was off about our granddaughter Dylan, but physicians were not able to diagnose her. My daughter kept digging for answers, becoming more and more frightened with having no definitive answer. Finally, at age 3, a diagnosis for Dylan was found: Neurodegeneration with brain iron accumulation. At first, relief. Then terror when we learned exactly what that meant. My daughter found the NBIA Association and although it didn't change Dylan's diagnosis, it did offer life saving direction. My daughter was connected to other families facing the same experience. She was given a much more detailed vision of this disorder and myriad suggestions and support as to managing the emotional rollercoaster her family was now facing. The annual conferences were godsends, ensuring her that the medical community has never forgotten these children. She learned about the research, met passionate and committed doctors and she met other families where tears, laughter, and embraces were shared. This was a safe place where Dylan could meet other kids. A place of no judgment, no sideward glances. A place that was welcoming. I cannot imagine how one would live through this disorder without the support of NBIA. We are blessed and we are thankful to all who are helping the families that are living this life.

1

Donor

Rating: 5

People who are ill depend on doctors and scientists for their recovery; however, the support of their families and friends is essential for their well-being. NBIA supports the supporters and gives the necessary inspiration and aid to families in great need.
I admire the amazing daily work supported and made possible by NBIA.

1 Vanessa S.5

Volunteer

Rating: 5

I am given the amazing opportunity to write articles for the newsletter of this nonprofit. I have a strong passion for rare disease and I have absolutely loved my time volunteering for this incredible organization. It has inspired me to aspire to become a genetic counselor and help families like those that are affected by NBIA. Patty (organization’s president) is so kind and helpful. If you have any questions or concerns she would be a great person to reach out to. She has many connections and is a great leader.

2 Kylie Nichelle C.

Volunteer

Rating: 5

I was a nanny for the sweetest little girl Dahlia who has BPAN. She opened my eyes to rare diseases and the fight parents and family members make for their children. I joined their Facebook group and it continually has shed so much light on what those who have a NBIA disorder go through in their daily lives. We need to spread the word and help these kids that are truly the light of the world!

2 Nicole V.2

Volunteer

Rating: 5

I am so appreciative of this website and organization. When my niece was diagnosed with BPAN, it was a guide to help me learn and I love that it has created awareness for others. Keep it up NBIA!!

1

Donor

Rating: 5

A friend of a friend forwarded an e-mail asking to set our Amazon Smile beneficiary to NBIA Disorders. I had never heard of this condition, but was able to gain a lot of information through the resources on this site. It really opened my eyes to the importance of bringing awareness to something so rare, and I encouraged others to read about NBIA as well as to donate through their Smile accounts as well.

1

Donor

Rating: 5

I have been a donor to NBIA Disorders Association for many years, as they search for a cure for a rare but devastating disease. I have found them to be a passionate & focused organization. They have effectively advocated for affected families, and successfully enlisted scientists.

1

Donor

Rating: 5

Everyone at NBIA does an amazing job. They really care about helping kids and young people who suffer from this rare disease and they put a lot of effort and dedication in organizing events to collect money to find a cure. It is always a pleasure to help them in their quest to improve and change the lives of their loved ones.

1

Volunteer

Rating: 5

Learning of a friend's daughter's diagnosis was the first time I had heard of this tragic disease. I felt helpless and uneducated. NBIA Disorders was a terrific aid in learning about the condition in the hopes of becoming more understanding of their family's situation. It put me in a better position to be of assistance. The resources and aid they offer are great.

1 Beni T.

Donor

Rating: 5

My grandaughter, Dylan, suffers from BPAN, which is a variation of NBIA. When doctors, after years of tests, were able to diagnose her disease my daughter and son-in-law needed to find out just what BPAN was. They found the NBIA Disorders Association and contacted the president of the Association, leaving a phone message . They were contacted with the hour, their questions were answered, and a relationship was established.

The conferences that the Association organizes are very informative and offer NBIA families the chance to come together for an harmonious weekend of learning and a chance to meet families from around the world struggling to beat this evil disease.

The monthly newsletter is filled with updates of research, along with news of fundraising opportunities.

The NBIA Disorders Association truly eases the lives of families touched by the disease.

1

Client Served

Rating: 5

The NBIA Disorders Association has been a beacon of light through what could have been a dark journey for our family. We’re grateful for the HOPE the NBIA Disorders Association has given to us for our daughters future.

2 Sherry B.5

Client Served

Rating: 5

My daughter has BPAN which is considered an ultra-rare disease so sometimes finding information on it can be difficult. NBIA Disorders Association has been a godsend. They have also helped us with a scholarship so we could attend a conference to learn more.

2

General Member of the Public

Rating: 5

When you have a child with an exceptionally rare disease you need help. The NBIA disorders association gives me the help and advice I need. From medication support through to genetic testing and current research they are a most invaluable organisation

2

Client Served

Rating: 5

My daughter was diagnosed with an unknown NBIA disorder in 2011.
I did internet searches looking for information. I found the NBIA Disorder Association's website on the second page of search results. The President at that time was Patricia Woods, who I contacted. The Association has help with information that has given my daughter a better life then she otherwise would have.
In March 2012, my family went to the NBIA conference in Missouri that was sponsored by the Association. While there, my daughter and other donated blood for research in locating the gene that caused her development delay. The gene was discovered later that year. After genetic testing, my daughter tested positive for the WDR45 that was discovered, now known as BPAN. The research was was made possible from grants the NBIS Disorder Association.
My daughter was 30 years old in 2012. For 30 years, we had no reason or understanding of my daughter's decline. The NBIA Disorder Association helped my family with understanding and treatment options for her disorder.

2 Jenny W.2

Client Served

Rating: 5

My daughter was diagnosed in May of 2019 with BPAN. We were lost and devastated, but not lost for long because we found NBIA DA, and they connected us with other families and we created connections that have honestly held me together through this tough time. NBIA DA is a tremendous resource for my family. They have always been there for us with information, resources, valuable service, and I know they do all they can with our donations to help in their mission to find a cure for NBIA.

2

Volunteer

Rating: 5

I was three years old when my sister, Josie, was born. After a year it became clear that she wasn’t reaching milestones that most babies do. Her favorite word was, “eee” which meant anything from she wanted something to a whole story she couldn’t quite communicate.
In second grade, I gave a class presentation about Josie’s disease. My mom helped me piece together things doctors had told us so far, but it wasn’t a diagnosis, it was a guess. We wanted answers, but doctors didn’t have them.
Three years later, when Josie was eight, we finally got a diagnosis of Infantile Neuroaxonal Dystrophy (INAD). It was and still is extremely difficult to come to terms with the fact that my sister will keep losing abilities and currently there is no cure.
The NBIA Disorders Association has been an invaluable resource for my family. It has connected us with many other families who have gone through similar experiences. It has kept us up to date on all the research for these disorders. Most importantly, it has provided us with a community of hope. Yes, coming to terms with a degenerative disease is difficult, but we’re not alone and progress is happening.

4

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

4 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.

2 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

4 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.

4

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.

4 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.

4

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.

4

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.

4

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.

4 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

5

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