Tag Archives: Hope for Katherine Belle

Two NUBPL Families Meet For First Time, 2,000 miles apart

A little over two years ago, we received Katherine’s results for Whole Exome Sequencing (WES), giving us a name, NUBPL, to the disease that was a mystery to her doctors and is responsible for the atrophy of her cerebellum. Although we finally knew the name of the mutated gene, and that it was considered a rare form of Mitochondrial Complex 1 Deficiency, we didn’t know much more than that. In fact, at the time we quickly learned that her disease was recently discovered.

Although we were elated to receive a diagnosis, we realized that we didn’t know how the disease would affect Katherine’s life. Her doctor had never seen another patient with NUBPL, so he didn’t have much to tell us in terms of disease progression.

We searched the Internet looking for any information we could find, which included a couple of scientific articles citing six patients from 5 unrelated families. From these articles, we learned more about the patients, including sex, age, country of origin, clinical signs, MRI details, when and if they walked independently, and cognitive function. We had no way of contacting any of these families without knowing their names or doctors. We didn’t even have a photograph.

I felt like a detective scouring the Internet hoping to find a clue. I started tagging everything we shared with “NUBPL” and searched the Internet several times a day for a signal from anyone out there who had this disease. I posted in Facebook groups and wrote blog posts, anything I could think of that might put us in contact with another family with this same disease.

Just a few weeks later, I was looking through posts on the Global Genes Facebook page when I noticed a post from a mom sharing a link to a documentary about their 14-year journey to a diagnosis for both her daughters who were diagnosed with NUBPL. As I watched the documentary, tears rolled down my face as I picked up the phone to call Dave to tell him I’d found another family. And that they looked happy and one was walking independently. After living with a misdiagnosis for nearly two years of a quickly fatal disease, I’ll never forget the moment that I saw the smiling face of a 16-year old girl with same disease as Katherine.

Everything is about perspective in this life. After being told that my child was going to die by the age of seven, that first glimpse at Cali Spooner’s face added  years to my child’s life. In her photograph I saw Katherine smiling back at the camera. For the first time, I saw Katherine as a teenager.

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And then I saw Ryaan Spooner’s face and recognized my Katherine in her as well. And she could walk independently. Their body types were even similar.

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The Spooner Family

I got off the phone with Dave and contacted their mom, Cristy, who responded immediately and we’ve been in contact ever since. She put us in touch with their doctor at UC-Irvine, Dr. Virginia Kimonis, who was growing fibroblasts to learn more about the disease. We contacted Dr. Kimonis and sent Katherine’s skin biopsy for research.

Last week, our family traveled to California to attend the first NUBPL Family Conference at UC-Irvine and to spend time with the Spooner Family.

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We heard from several researchers and toured the lab where they have been growing our daughter’s fibroblasts.

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And a few days later, we were able to introduce our girls to one another for the very first time.

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Both of our families instantly hit it off as we watched our girls play together. We were all sad that the night had to end and we had to go back to living on opposite coasts.

Katherine and Ryaan share a love of dolls and both are fiercely determined and independent. They are very similar in many ways. Katherine watched Ryaan walk independently, which she learned to do at Katherine’s age (they are two years apart). After seeing Ryaan walking, Katherine is now determined more than ever that she’s going to do the same. And I know she will.

Our girls are three of 11 NUBPL patients identified in the world. After spending time with The Spooner Family, I am reassured more than ever that we will find more NUBPL families in the future. These things take time and we are just getting started.

We are two families brought together through science, hope, love, and a fierce determination to give our girls the best chance possible at life. Where science hasn’t caught up, we will fund the research ourselves through our non-profits. Where there are barriers to diagnosing more patients in the future, we will spend our time to eliminate those barriers. And when we cannot find those patients as they are diagnosed, we will do everything we can to make sure they can find us.

As our families were spending time together in California, a mom with two daughters made contact with both of us. Yes, I am hopeful that we will grow our NUBPL community.

1st NUBPL Foundation Fundraiser

Last year we founded the NUBPL Foundation to elevate NUBPL awareness and research. In February 2015, our daughter was diagnosed with a recently discovered form of Mitochondrial disease named after the affected nuclear gene, nucleotide-binding protein-like (NUBPL). As one of 11 identified patients in the world, research is needed to understand more about this disease.

This is an exciting time for our family as we expand our rare disease journey to grow NUBPL’s patient population and fund research and, hopefully, develop a treatment or cures.

We had our first fundraiser at the Haymarket Whiskey Bar in Louisville, Kentucky, on February 25, 2017. Our foundation was selected as one of 200 charities to receive a bottle of Buffalo Trace O.F.C. Vintage Collection, an estimated value of $10,000 per bottle.

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Coordinated by Dave’s cousin, Brian Shemwell, founder and president of the Paducah Bourbon Society, Haymarket Whiskey Bar, Masonic Homes of Kentucky (event food sponsor), and five regional bourbon societies – Louisville, Paducah, Owensboro and Lexington Bourbon Societies and JB’s Whiskey House of Nashville – came together under one umbrella to support our cause, raising a total of $32,000 in ONE night for the NUBPL Foundation from rare bourbon tastings and silent auction items.

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Dave and I were blown away by the level of support we received from event sponsors and attendees. As Dave concluded his speech about our rare disease journey and the NUBPL Foundation, he concluded with these words:

“Whiskey is a Celtic word meaning ‘water of life’ and it’s never been more fitting than this moment. Tonight we raise our glasses of whiskey to save a life. To life.”

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Five

If you’ve followed along since the beginning, you know the significance of these numbers.

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In past years, Katherine’s birthdays have been bittersweet, especially her third birthday.

Three:

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Unbeknownst to me when I ordered it, this birthday crown is clever and cost efficient. Instead of buying a new one every year, I can use the same one and just add a new number…you get the idea. Unfortunately, this little crown brought so many tears. Will she get to use every number? Please let her use all of these numbers.

Four:

Looking back, we realize that every prior birthday has greeted us with worries. By her first birthday, we knew something was wrong; our expectation that she would walk prior to turning one proved untrue and her motor development had stalled. Our nagging worry at one was a gut wrenching terror by two; she still was not walking. On her third birthday, we were living under a death sentence and the day was a bittersweet reminder that we probably had few such occasions left…Today, we have a new – an accurate – diagnosis, NUBPL, Mitochondrial Complex 1, and a new hope. This is a happy day and one of many more to come.

As I carefully placed those five pink and purple candles on top of her cake, a sense of relief washed over me. The haunting statistic that “30% of children with rare and genetic diseases will not live to see their fifth birthday” is now behind us. Yes, there are many struggles ahead, but it’s an indescribable moment to see those happy and beautiful sparkling eyes glowing in the light of five birthday candles.

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Soon after Katherine’s (mis) diagnosis in 2013, I wrote the following:

I do not know what tomorrow brings. None of us do. I believe in science, prayers, hard work, positive thought, and the healing power of love. Each day I share my photographs with friends and family and tell them a story that does not always require words, and that sometimes cannot be expressed with them. It is a story of faith, hope, love, and determination. As we continue ahead on our journey toward a diagnosis, I see a brave and thriving girl who is progressing, not regressing.  I see a happy and joyful child who meets every obstacle or challenge with the biggest smile and the most positive attitude. I see a future with many more photographs of accomplishments, milestones, and laughter. In all of my pictures, I see faith, hope and love. Above all, I see an abundance of love.

I have cried many tears in the last three years from witnessing the physical decline and death of numerous children with rare diseases we’ve met through social media. Instead of planning birthday party celebrations and school graduations, I have watched families plan funerals and suffer more than any human ever should.

As we continue ahead beyond this fifth birthday milestone, my own words lead me into the next chapter:

The past few years have been excruciatingly painful and tough, but I have learned a very valuable lesson: You never know what the next second of your life will bring.  My daughter guides me daily and reminds me that each moment is precious. Each day is a gift. She has taught me the significance of the quote, “We do not remember days, we remember moments.”  I have learned to enjoy and live in the present because it truly is the only moment that matters.

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2016 Rare Disease Day $1 Challenge

We all live a life that can never be fully conveyed through social media – a world we see daily that cannot be shared or adequately described through five second sound bites or a quick snapshot. These moments are felt and lived, not shown and told.

I give you countless examples and observations, but I know I always fall short in my depiction. At the end of the day, all I have is a promise to myself and my daughter. It’s easy to tell myself I’m doing enough, and I am in the normal world, but nothing about our journey is “normal.”

We must push forward and harness the scientific possibilities for treatment beyond clinical trial drugs and therapy. We are growing Katherine’s stem cells and raising money to fund NUBPL research. Advances are being made daily and we need to fuel it. This is what I mean by not giving up.

I fight a daily battle on the home front, which is mighty enough, but there’s a larger war beyond our doorstep that, if won, can ease the struggles of all of our personal fights.

This is what ‪#‎Hope4KB‬ means to me.

February 29th is Rare Disease Day 2016 – just 55 days away. Each year we try to do something special to raise awareness. Last year we sold #Hope4KB t-shirts and asked that you wear them on Rare Disease Day. We raised $2700 for rare disease.

Our $1 challenge for 2016 is simple:

  1. SHARE this post; and
  2. Challenge yourself to donate just $1 (or more) to one of the following: Hope for Katherine Belle or The Spooner Girl Foundation. Our daughter’s disease is called NUBPL and has been linked to Parkinson’s Disease. (Click here for the full bio of lead researcher, Dr. Virginia Kimonos.) All donations will directly go to NUBPL research, treatment, and hopefully, a CURE! It is amazing how much can add up if everyone gives just a little.

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A Response To Our Naysayers: Rare Disease Statistics Are Absurd Because They Are Accurate

On the Home Page  of our blog, we state that “Rare diseases affect more people than all cancers plus HIV combined, yet half of the patients do not know what is wrong.” In a recent Reddit string (we were not part of this conversation, but merely stumbled on it), this statistic raised a particular person’s ire, but not for the right reasons, in our opinion.  He/she stated:

“‘Rare diseases affect more people than all cancers plus HIV combined, yet half of the patients do not know what is wrong’…I’m calling BS on this. Well yeah, because … No.”

This person went on in another post to call us “pretty absurd,” following up with the following statement: “It’s pretty basic statistics that researchers do. From this document, we can infer that cancer prevalence is about 4.5% (14.5 million / 318.9 million). It’s pretty absurd to claim that these rare diseases, each of which 50 people have in the whole world, add up to more than 4.5%.”

When someone else stated that it might be feasible, he/she then stated: “No, it’s not really plausible. Given that the source is some layperson’s blog post on the internet, I don’t understand why you’re trying to find a way to give it credence… To give a bit of perspective, how many people have you known who have had cancer? How many have you known with one of these ultra-rare diseases? To broaden this a little bit, in my two clinical years of med school, I saw exactly one case of a rare disease while nearly all of my peers saw none. We all saw hundreds of patients with cancer.”

When someone finally pointed out that this response relied on anecdotal experience, he/she ended with:

“No kidding. And yet it’s stronger evidence than what she [Glenda] gave.”

We will bite our tongues on the lack of civility and arrogance in the tone of these posts, particularly when one considers that it is in response to efforts to raise awareness about rare diseases in general, and to share with the world our story. Others were also skeptical – though none were quite so arrogant. Therefore, we feel it merits a response and to provide the support for our statement. And, for the record, we are trying to make our blog readable, not a series of medical journal articles. Therefore, we are not loading it up with footnotes and citations. That does not mean we do not try to make sure our factual comments are accurate.

Let us clarify this prior statement. … It is correct exactly as worded, “Rare diseases affect more people than all cancers plus HIV combined, yet half of the patients do not know what is wrong.”

To use the words of the commenter, who goes by the user name uicucengineer, “well, yeah, because… yes.”

We “lay” “bloggers” did not originate this statement. You need not give us “credence” to believe it. We first heard it from a neurologist speaking as part of a panel of neurologists and geneticists at the United Mitochondrial Disease Symposium in DC.

Before we repeated it, we actually did some research. This statement is repeated on the Global Genes website  – go to the bottom, under “care about rare” you will see it come up as part of the rolling information. It and the statistics we set forth below, are repeated in many reports and studies. They are simple to find for anyone caring to look before they speak or post – Dear uicucengineer, Google is your friend.

One problem with uicucengineer is that he/she did not bother to educate himself/herself on the definition of “rare disease” before sounding forth. “Rare disease” has an actual definition. It is not just a disease “50 people have in the whole world” as uicucengineer (who claims to have two clinical years of med school) believes. While it is true that such a disease would qualify, in the United States, a condition is considered “rare” if it affects fewer than 200,000 persons (in the US) combined in a particular rare disease group.

Don’t want to take the word of a “lay blogger?” How about Federal law? Forty-two United States Code section 287a-1(c), provides as follows: “For purposes of this section, the term ‘rare disease’ means any disease or condition that affects less than 200,000 persons in the United States.”

There are over 7,000 diseases that qualify. See Globalgenes.org.

The numbers add up.  According to the Global Genes’ website:

  1. 30 million people in the United States are living with rare diseases (this number is supported by the NIH);
  2. This equates to 1 in 10 Americans or 10% of the U.S. population;
  3. Similar to the United States, Europe has approximately 30 million people living with rare diseases;
  4. It is estimated that 350 million people worldwide suffer from rare diseases; and
  5. If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.

By contrast, according to SEER.cancer.gov, there are currently a little under 13.8 million cancer patients and survivors in the United States as of 2015. That’s right, 30 million versus 13.8 (rounding up).

HIV totals do not make up the 16.2 million difference. The global total of HIV infections is estimated at 34 million, with 1.4 million in all of North America (according to AVERT).

While cancer and HIV rates vary somewhat from country to country, these prevalence rates generally carry through. Cancer and HIV patients and survivors add up to far fewer than rare disease patients. Alone we are rare, together we are common.

Sorry you did not see more of us in your two clinical years at med school, uicucengineer, but we are out there. We are all around you. Please open your eyes and learn about us, what we suffer through, and what we need. Please do not go into medicine if you are not willing to learn and to research before you speak – unknowledgeable medical professionals are already a significant problem to the rare disease world.

Another commenter on this string (was far more civil) and stated:

“I do have a bit of an issue with this statement: ‘Rare diseases affect more people than all cancers plus HIV combined, yet half of the patients do not know what is wrong.’ Well yeah, because cancers and HIV are specific diseases whereas ‘rare’ diseases can be any number of undiagnosable things. I’m not sure what their point is.”

When someone chimed in with some points about funding (thank you 88Wolves, whoever you are), the original poster responded:

“But funding for cancer can be applied across a finite number of diseases, whereas for rare diseases it’s literally anything. It does seem the funding would support increased genetic research which I suppose can only be a good thing, but a ‘rare’ disease is never going to be able to receive the funding that cancer or HIV do because they’re rare.”

This comment makes some valid points, and deserves a response. Here are a few additional facts:

  1. (From Global Genes) 80% of rare diseases are genetic in origin;
  2. (not from Global Genes, but carrying through on the math contained therein) That means of the approximately 30 million people in the U.S. with a rare disease, approximately 24 million have a genetic origin;
  3. (Global Genes) Approximately 50% of the people affected by rare diseases are children;
  4. (Id.) 30% of children with rare disease will not live to see their 5th birthday;
  5. (Id.) Rare diseases are responsible for 35% of deaths in the first year of life;
  6. (Id.) The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases;
  7. (According to the Kakkis EveryLife Foundation) 95% of rare diseases have not one single FDA approved drug treatment;
  8. (Global Genes) During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined;
  9. (According to the National Institutes of Health Office of Rare Disease Research) Approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease;
  10. (Id.) Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease;
  11. (According to the Rare Disease Impact Report) The average time to diagnosis for a rare disease is about 7.6 years in the U.S., and 5.6 in the U.K.;
  12. (Id.) The typical patient goes through 8 physicians before getting a diagnosis;
  13. (Id.) The average patient is misdiagnosed between 2 and 3 times before getting an accurate diagnosis;
  14. Few insurance policies will cover the genetic tests necessary to diagnose these diseases; and
  15. (Id.) While over 90% of rare disease patients/families surveyed had insurance, 55% had uncovered expenses related to the disease, 53% had to spend their savings to reach a diagnosis, 34% had to obtain charitable or public assistance, and 23% had to use their retirement accounts.

While it is true that research into one disease might not benefit another, this is not invariably true and there are many common issues across diseases.

For example, since most of these diseases have a genetic cause, it is important to all of the disease population to have easier, cheaper, and faster access to genetic testing. Insurance companies need to stop refusing to cover these tests and should drop requirements that all non-genetic tests be exhausted before genetic tests are considered. In our case, our daughter went through numerous tests before Whole Exome Sequencing, all because we had no prayer for insurance approval until we did so. These included two MRIs, two skin biopsies, a spinal tap, an EMG, an EEG, an EKG, a genetic ophthalmologist appointment, dozens of blood tests and numerous urine tests. These required our daughter to be anesthetized several times, and some were invasive (EMG, spinal tap, and biopsies). None led to answers, only a misdiagnosis of Infantile Neuroaxonal Dystrophy. The Whole Exome Test required a mere blood draw and gave us a correct diagnosis – a year and a half later and after two insurance denials and appeals and having to live with a misdiagnosis that gave our child a life-expectancy of 7 to 10 years of age. No patient should go through this. With progressive diseases, as many of these are, delays can cause irreversible damage as possible treatments (like EPI-743 and Mitochondrial Cocktails) are not given.  Patients need to be allowed access to the best diagnostic tools available, to have access to the less invasive and better test first, and to the insurance coverage they thought they were paying for, not to have insurance companies delay diagnosis, dictate care, and refuse coverage. With expanded knowledge, with coordination and a gathering of our voices, pressure can be put on insurance companies (or legislation when necessary) to stop these practices.

With expanded genetic testing comes expanded understanding of our genetic code. This may lead to the next generation of medicine, including the genetic bases or susceptibilities toward all diseases.

Government initiatives like the Undiagnosed Disease Program at the NIH and the Precision Medicine Initiative can help spur research and diagnosis.

Some research and treatments can carry across diseases, including stem cell research, genetic therapies, and technologies like CRISPR (or the like).

With expanded genetic testing, screening can become cheaper, leading to treatments at an earlier age and the prevention of unnecessary disease progression.

The government can continue to provide incentives like the Orphan Drug Act to encourage companies to invest in rare disease treatments and research.

Databases with wider access can be created to allow professionals and advocates to make connections themselves.

According to the professionals (as discussed in the Rare Disease Impact Report), physicians are not sufficiently aware of rare diseases. Many have no idea how to spot them or where a referral needs to be made. See also uicucengineer.

Finally, many of these diseases have traditionally been the things that people “just don’t talk about.” The stigma of genetic disease needs to go away. Our rare children are beautiful and the world needs to know about them. See Katherine Belle.

Exhale

Exhale.

I had a baby four years ago –
Baby never walked.
Physical therapy, occupational therapy, MRI…
Baby girl will die.

Not my baby girl, said I.

“Spend as much time with her as you can” –
Doctors, testing, genetics GALORE.
Stabbing pain in my heart…
Baby girl will die.

Not my baby girl, said I.

I see something you don’t see –
A fighter. A warrior.
She has her mama’s spirt…
Baby girl will not die.

Not my baby girl, said I.

Exhale.

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Happy first day of school, baby girl. We love your spirit and determination.

What is NUBPL?

Gene Name: NUBPL, acronym for Nucleotide-binding protein-like

Also Known As:  Iron-sulfur protein required for NADH dehydrogenase or IND1

Location: Chromosome 14q12

Symbols: NUBPL; IND1; huInd1; C14orf127

Genetic Inheritance: Recessive

Gene Function: It is an iron-sulfur (Fe/S) protein that, in humans, is encoded by the NUBPL gene. It that has an early role in the assembly of the mitochondrial complex I assembly pathway.

Mutations in the NUBPL gene may cause a rare form of mitochondrial complex I disorder.

Typical clinical signs and symptoms:

  • Age of onset 1-2 years old
  • Developmental delay: Some patients
  • Delay: Motor; Unable to walk
  • Speech: Abnormal (Dysarthria)
  • Eyes: Strabismus; Nystagmus
  • Ataxia: Trunk & Limbs
  • Contractures
  • Spasticity
  • Cognitive: Normal or Reduced
  • Myopathy
  • Other organs: Normal
  • Course: Progressive, continuous or episodic

Laboratory signs:

  • MRI: Leukoencephalopathy with abnormal:
    • Cerebellar cortex: Progressive
    • Cerebral white matter, deep: May resolve
    • Corpus callosum: May resolve
      *Although these are characteristic MRI findings, there are others including abnormalities in the grey matter of the cerebellum, as is discussed in Hope for Katherine Belle.
  • Lactate: Serum normal or high; CSF normal or high
  • NUBPL protein: Reduced
  • Muscle biopsy
    • Histology: Ragged red fibers; No COX- fibers

Biochemistry: Complex I deficiency

Overview of NUBPL Mutations
GeneDx (USA): c.166G>A (maternal); c.815-27T>A (maternal); and c.693+1G>A (paternal)

Ambry 1 & 2 (USA): c.311T>C (maternal); p.L104P (maternal); and c.815-27T>C (paternal)

Kevelam 1 (Arg.): c.166G>A (unknown); and c.815-27T>C (unknown) (older results)

Kevelam 2 (Ger.): c.166G>A (paternal); c.815-27T>C (paternal); and c.667_668insCCTTGTGCTG (maternal)

Kevelam 3&4 (Can.): c.166G>A (paternal); c.815-27T>C (paternal); and c.313G>T (maternal)

Kevelam 5 (USA): c.166G>A (paternal); c.815-27T>A (paternal); and c.693+1G>A (maternal)

Kevelam 6 (Neth.): c.166G>A (maternal); c.815-27T>C (maternal); and c.579A>C (paternal)

Kevelam 7 (Australia): c.166G>A (paternal); c.815-27T>C (paternal); 240-kb deletion (maternal); and 137-kb duplication (maternal)

Research

Sheftel, A. “Human Ind1, an Iron-Sulfur Cluster Assembly Factor for Respiratory Complex I”. Mcb.asm.org. Retrieved 25 April 2015

Sheftel, A. “Human ind1, an iron-sulfur cluster assembly factor for respiratory complex I”. Mol. Cell. Biol. 29 (22): 6059–6073. PMID 19752196.

Calvo, S. “High-throughput, pooled sequencing identifies mutations in NUBPL and FOXRED1 in human complex I deficiency”. PMID 20818383.

Kevelam, S. “NUBPL mutations in patients with complex I deficiency and a distinct MRI pattern”. Neurology 80 (17): 1577–1583. PMID 23553477

NUBPL Families In the Press

Connect

The more we connect with other NUBPL families, the closer we get to finding a cure.  Do you have NUBPL or do you think you may?  Or, are you a researcher who is interested in studying NUBPL?  Please contact us.  We want to hear from you. Although some families are public about their journey, we respect your desire for privacy.

Katherine Belle’s Story, Age 3
Katherine’s whole exome sequencing results identified the following:

Compound heterozygous for the c.693+1G>A mutation and the c.815-27T>C;c.166G>A likely-disease causing complex allele in the NUBPL gene.  This is associated with mitochondrial complex 1 deficiency.
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Cali and Ryaan’s Story, Ages 16 and 6
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FULL VIDEO – The Spooner Family Documentary: The Life We Live http://thelifewelivedoc.com

Contact

NUBPL.org is a patient-run web site created for parents, doctors, or researchers who may know individuals with NUBPL. The more patients, the greater our sense of community, resources, and research opportunities to find a cure. Contact: gcmccoy1@aol.com or NUBPL.org.

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Hope for Katherine Belle