About

ValenTeam Foundation sponsors ways to cure Duchene through foundraising events and social media. Our goal is to inspire people to live a more meaninful life.

WE HAVE ONE GOAL

Our Loving Family

We are the Negrini-Heymich Family. A non typical family that lives in Austria. More specifically in Serfaus, a small town in Tirol.

Natalia the mum is Brazilian, half Italian, and left Brazil already for 10 years

Lukas the dad is Tiroler, he spend most of his time in the USA

We met in Barcelona, and decided to marry and move to Austria in 2017

Valentin was born in january 2018. He was born with 25 weeks, 690 grams, 30centimeters. Really small… The beggining of Valentin life was not easy. He was at the hospital for 158 days. During this time he fought for his life.

About Valenteam Foundation

Valentin was born in 2018. I had Pre Eclampysia and HELP syndrome, he was born with 25 weeks 690 grams and 30 centimeters.

The stoy from Valentin start to define itself there, because shows a lot who he is.

Valentin is a child who has the ability to change whatever space he is in – he has an energy that is the energy that moves the world

When Valentin was a year and a half and we were already at home celebrating life for a long time, we received the diagnosis that Valentin has Duchenne.

Duchenne pacients like Valentin suffer from a problem , a DNA Problem, which impacts the protein making process in their bodies.

A child with Duchenne can not repair their muscle. This means that he is losing muscle mass daily.

Meaning the life expectancy is somewhere between 20 and 30 years old

When you receive the diagnosis that your child has a fatal disease, without treatment and without a cure, it is a death sentence.

But then I remembered that I had promised that life was worth living. So if I had promised him that life was worth it in the hospital, now I had to make life really worth it,

As we learn about the disease, its progress in research and the medical possibilities to treat Duchenne.

It was the hope that was missing, because we said, now we have a way, we can cure him.

 We started Valenteam Foundation to help all the children suffering from Duchenne and other sources of Muscle Dystrophies

Together we are stronger

Duchenne

What is it

DUCHENNE MUSCULAR DYSTROPHY

 (DMD)

.The most common fatal genetic disorder diagnosed in childhood

  • Is a disease that weakens the bodys muscles over time.
  • progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs.
  • The average age of diagnosis is 5 years old.
  • Boys typically require a wheelchair by mid-teens
  • Boys typically DO NOT SURVIVE their mid-twenties
  • THERE IS NO CURE

Symptoms

  • Average age of Diagnosis is 5 years old.
  • Delayed Gross Motor Skills: rolling over, sitting up, crawling, walking
  • Different Gait: Toe walking, walking with belly out
  • Falling often
  • Large Calves
  • Needing help getting up from the floor or using arms to “walk” the body to a standing position (Gower’s maneuver)
  • Fatigue
  • Delayed Speech
  • Behavior and Learning difficulties

The Biology & Sciense

  • the Duchenne gene is found on the X-chromosome, therefore it is passed from the mother and primarily affects boys
  • If a woman has the Duchenne-causing mutation in one of her chromosomes, she is considered a carrier. As a carrier, she likely has no symptoms of the disease, but she has the ability to pass it along to her child.
  • Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone.
  • Duchenne is caused by mutations to the dystrophin gene. Most commonly, one or more exons (a portion of the gene) are missing, and the remaining exons don’t fit together properly. There could also be a duplication of one or more exons.
  • The mRNA shown below comes from the dystrophin gene, and contains 79 exons that are linked together to form the instructions for making dystrophin protein. Researchers have discovered that mutations, or errors, in the dystrophin gene alter the instructions for making dystrophin.
*Fritz has a deletion of exons 57, 58, 59.
*Valentin has a rare duplication on exon 28

Treatment

  • Medications
  • Steroids
  • Stretching
  • Physical Therapy

Resources

  • Supplements & Nutrition
  • Exon-skipping
  • Gene therapy
  • CRISPR/Cas9

Cure rare Disease

What We Do

Developing customized therapeutics for those who have been diagnosed with rare, genetic diseases that have no treatment or cures.

Pioneering Progress

1. Characterize mutation

Characterize patient’s genetic mutation and establish a cell line through a tissue biopsy

2. Prototype and Optimize

Prototype and optimize therapeutic candidates capable of fixing mutation in the cell line.

3. Test efficacy

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor iTest candidates via tissue modeling and/or mutation-specific mouse model for efficacy.

4. Manufacture and test safety

Manufacture final therapeutic and conduct pivotal study. Submit IND to the FDA for approval.

5. Clinical trial

Dose patient with therapeutic and conduct long-term follow up.

DWith demonstrated in-vivo efficacy and a successful FDA pre-IND meeting, we are preparing to administer our first custom therapeutic to treat a patient who has Duchenne muscular dystrophy


Our Partners

PandaBee

International Social Media Manager

Pipah Comunicacoes

Social Media & PR Agency Brazil

Dream Facilitation

Project coordination

Nadiia Zwyssig

Website Developer

Olivia Pedroso

Content Creator/ Videos

Vivian Amaral

Design

Cure Rare Disease

Sciency