Welcome to Marta’s Voyage,

Marta is one of those 7 seas sailors, a young mariner, earrings and all! An infinite smile tattoed on her face and a body full of scars, a symbol of her fight. A sailor in training, keeping watch from the crow’s nest in search of

Laaaaand ahoy!

Marta_Recortada

Her voyage is called Niemann Pick type C (NPC) and she’s sailing towards a new world called Gene Therapy to find a cure for a disease that, at the moment, has no cure.

Her ship is named Columbus, the foundation fighting to make that new world a reality for Marta and other children like her.

They need as much help as possible to make it to safe port!

CHARITY NIGHT

SOLD OUT!! Although,

There are many ways to join Marta’s Vogage. Want to get enrolled? We make it easy!

1. Click on the button below to access the donation section within the Columbus Foundation’s website.
2. Under “Cantidad”(Amount) write whichever amount the amount.
3. Under “Concepto” (Description) write as follows:
Fila Cero (ROW 0) @elviajedemarta
4. Please don’t donate anonymously! We need to know your name to send you your tax deduction form.

You can also donate via bank transfer to:

IBERCAJA: ES15 2085 9366 1303 3033 9645
LA CAIXA: ES31 2100 4553 1302 0019 8855

The sailor

WHO IS MARTA?

Marta is almost 5 years old girl who has Niemann Pick C (NPC), a rare neurodegenerative genetic disease.

When she was just 2 months old, she was diagnosed with the most severe form of the disease: early infantile onset. However, this is just some of who Marta is.…
Marta is also the story of OVERCOMING obstacles, in capital letters. Nothing stops her from singing and smiling in her dreams, transporting all of us with her. With each smile, each look.
Marta is the tireless watcher. From her wheelchair she keeps watch upon her sisters, not letting them out of her sight for a minute. She protects and cares for them. Love is her best medicine.
So far, her life has been a short but very intense journey.
Sadly, her life is also quite limited. The disease has worsened during the last year. She can no longer remain seated independently without help. Her health is quite fragile, as well. And her biggest frustration is knowing she can’t do anymore any of the things she had conquered with a lot of effort: crawling, walking holding our hand, communicating with short sentences and being pain free in arms and legs.
Despite all that, she teaches us daily how to look at life differently, through her own spyglass.

The Journey:

WHAT IS NIEMANN PICK DISEASE TYPE C?

Niemann-Pick type C (NPC) is a rare neurodegenerative genetic disorder

Niemann-Pick has different types. Type C is characterized by the inability of the body, due to a DNA defect, to produce the necessary proteins to transport cholesterol outside the cell. This leads to the abnormal accumulation of cholesterol on various tissues causing structural damage and functional disabilities. As a result, essential organs like lungs, brain, liver and spleen are affected and the organism deteriorates progressively causing irreversible damages.
As it happens with other rare diseases, there’s no cure yet, to this day. There are experimental treatments attempting to slow down its progression but in the end they all are ineffective.
There are currently over 40 families like Marta’s living with this disease in Spain

The Discovery:

WHAT IS GENE THERAPY?

Land ahoy! Gene Therapy is a huge revolution in tackling genetic diseases.

Broadly speaking, it consists on using a DNA vector (a virus) that, upon infecting the patient’s cells, transfers into them the correct version of their defective gene that is causing the disease. Thus, correcting that genetic issue.
At this time, it is the best alternatives, because it goes straight to the root of the problem, but it is also one of the most complex and expensive ones..
Up until not that long ago it seemed impossible its application on NPC. In fact, there’s still a long way to go and many unanswered questions. However, given the research done, so far, all points to it being able to significantly improve the quality of life and life expectancy for those affected.
Even then, the biggest hurdle is not the therapy itself but finding a company/ lab interested in scaling the production of that virus considering its cost effectiveness and the low level of business.
Because of the above, it was unclear to us how one organization alone would be willing to bet on developing a therapy for NPC.

The Ship:

WHO ARE THE COLUMBUS FOUNDATION?

The Columbus Foundation (Fundación Columbus) focuses primarily on facilitating the access to more advanced therapies for children affected with cancer or rare diseases.

The Foundation appeared in our lives one day. Fate pushed them to include NPC therapy in their program. For us, the Columbus Foundation is a drop of Humanity within the Pharmaceutical Industry
One of their big projects is the development of a rare disease gene therapy at an international level.
Throughout the last year, they have rolled out their strategic plan in collaboration with the only NPC research team in Europe: The University College of London (UCL) through Dr. Ahad Rahim. Their goal is the implementation of gene therapy; and to start the first clinical trial on NPC patients. Everything happens for a REASON

ENROLL!

Our ultimate goal is to support the research to find a cure and improve the quality of life for patients with NPC. Now it’s the time to provide as much support as possible:

 

  • 1- Fundraising to support Gene Therapy for NPC. Funds will go to the Columbus Foundation and/or the research and clinical team. This depends on where lays the biggest need throughout the process (lab, research, clinical trial).

  • 2- Increase the Columbus Foundation’s project visibility to attract investors, public and private, that can support the Foundation’s long-term mission.

OUR BEATIFUL PARTNERS!

#yoviajoconmarta

The Crew. Already over 1000 cabin-boys!

This is the crew @elviajedemarta Do you want to partake in their fight against NPC?
Take a look at us from your vacation spot. Grab a spyglass, point and shoot your best selfie! You will help us in raising awareness about this special project.
  • Follow us on Instagram @elviajedemarta or on Facebook: Elviajedemarta
  • Take a selfie with your right hand emulating a spyglass and the “C” in Niemann Pick C and Columbus.
  • Upload it to our Instagram account @elviajedemarta using the hashtag #yoviajoconmarta (I travel with Marta).

We have the best crew we could ever imagine for this voyage. LOVE in capital letters. The same LOVE that is pushing us to tell Marta’s story and fight for her and other children affected like her. The same LOVE that you are all showing by supporting our family on this project. Thank you to you all from the bottom of our hearts.

Cristina Villanueva
Little by Little FIsioterapia
Tania Llasera

Gallery: pictures & videos

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