Collected

2.115€

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300km por Duchenne (Sulayr)

Corremos para vencer a Duchenne!

Collected

2.115€

Goal

2.000€

Donations

82

Left

Finished

106%

Cause lead by

Christine Nixon
Rafa Segundo

Category

Investigación científica Infancia Enfermedades raras

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Published: 14 Jun 2021

Two friends, Christine Nixon and Rafa Segundo, ultra-trail and marathon runners who adore the mountains. 

We love a challenge, we like to help, and we like to live life to the fullest. The perfect combination!

We planned a personal challenge of running the 300km+ of the Sulayr trail (GR-240) in 8 days at the end of August, (a marathon a day), crossing the Sierra Nevada mountain range from beginning to end. This morphed very quickly into becoming an even bigger challenge, and much more important; raising money and awareness for people suffering from Duchenne muscular dystrophy (DMD) and Becker (DMB).

Why Duchenne?

To raise funds and awareness for Duchenne Parent Project Spain (https://www.duchenne-spain.org), an association created by parents, relatives and friends of children who suffer from Muscular Dystrophy of Duchenne and Becker. Their main purpose is to find a cure for this terrible disease, which they try to do by granting research grants. Funded projects - Duchenne Parent Project Spain (duchenne-spain.org).


Duchenne muscular dystrophy (DMD) is a rare genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact. DMD is one of four conditions known as dystrophinopathies. The other three diseases that belong to this group are Becker Muscular dystrophy (BMD, a mild form of DMD); an intermediate clinical presentation between DMD and BMD; and DMD-associated dilated cardiomyopathy (heart-disease) with little or no clinical skeletal, or voluntary, muscle disease.

DMD symptom onset is in early childhood, usually between ages 2 and 3. The disease primarily affects boys, but in rare cases, it can affect girls. This disease is diagnosed in 54 boys and girls in the world daily.

Those affected by this terrible disease lose their independence and need a wheelchair between the ages of 7 and 12. Around the age of 16 they usually need assisted respiration. Life expectancy rarely exceeds the age of 30 and is often earlier. 

 

 

DPPE es una organización creada y dirigida por padres, madres y afectados por la distrofia musculare de Duchenne y Becker. 

https://www.duchenne-spain.org/quienes-somos/

 

Donators (82)

María Francisca

Hidden donation

1,352 days ago

Diego

20€

1,352 days ago

Asun

Hidden donation

1,352 days ago

Sara

15€

1,352 days ago

Francisco Jose Ortega Martínez

25€

1,352 days ago

Elisa Isabel Marcos

25€

1,352 days ago

Isaac

5€

1,352 days ago

Anonymous

Hidden donation

1,352 days ago

Anonymous

25€

1,352 days ago

Manu gallegos

25€

1,352 days ago

Antonio jesus

10€

1,352 days ago

JOSÉ

5€

1,352 days ago

Laura A.

Hidden donation

1,353 days ago

MLUISA

25€

1,353 days ago

Anonymous

Hidden donation

1,353 days ago

Paqui

10€

1,353 days ago

Francisco

15€

1,353 days ago

Maria Luisa

15€

1,353 days ago

Jose Manuel

20€

1,353 days ago

Anonymous

Hidden donation

1,353 days ago

Manuel Jesús

35€

1,353 days ago

Anonymous

70€

1,353 days ago

Anonymous

35€

1,353 days ago

Emma Lay

20€

1,353 days ago

Conor

50€

1,354 days ago

Ana Garcia

10€

1,354 days ago

Fernando

25€

1,354 days ago

Irene

10€

1,354 days ago

Vero

15€

1,354 days ago

Alvaro

50€

1,354 days ago

José

Hidden donation

1,354 days ago

Maite

35€

1,355 days ago

Silvia

35€

1,355 days ago

Felisa

15€

1,355 days ago

Alfre

25€

1,355 days ago

Carmen Gador

Hidden donation

1,355 days ago

Anonymous

50€

1,355 days ago

Maria

50€

1,356 days ago

EMILIO

20€

1,356 days ago

Anonymous

Hidden donation

1,357 days ago

Ana MG

Hidden donation

1,360 days ago

Joanne Wright

25€

1,361 days ago

Maria

50€

1,363 days ago

Anonymous

35€

1,364 days ago

Nuria

25€

1,364 days ago

Philip K.

50€

1,369 days ago

Isabel

50€

1,375 days ago

Simon Martin

25€

1,382 days ago

Perico

25€

1,382 days ago

Anonymous

25€

1,382 days ago

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Comments (34)

Diego

1,352 days ago

Un bonito reto que merecía un feliz final. Enhorabuena a los dos, sois muy grandes.

Asun

1,352 days ago

Con más personas como vosotros, el mundo sería mucho mejor. Gracias!

Sara

1,352 days ago

Aporto mi granito de arena!!!Mi más sincera enhorabuena. Un besazo enorme

Antonio jesus

1,352 days ago

Enhorabuena por esta iniciativa

JOSÉ

1,352 days ago

Un deseo cumplido y bien hallado por parte de RAFA y CHRISTINE esos 300K.
Las personas que ayudan a los más desfavorecidos son dignas de admirar.
Besos y abrazos 300 por Duchenne.

Emma Lay

1,353 days ago

What an achievement. Bravo!

Fernando

1,354 days ago

Mucha fuerza!! Bravo por vuestra iniciativa! Un abrazo
Fer y Ajo

Vero

1,354 days ago

Os deseo lo mejor 😘

Maria

1,356 days ago

Animo chicos! 👏🏼

EMILIO

1,356 days ago

Ánimo Christine!!!!
Tu puedes, un abrazo

Ana MG

1,360 days ago

Bravo campeones! Un abrazo, Christine xx

Maria

1,363 days ago

Mucho ánimo 👏🏼

Isabel

1,375 days ago

Vamos a conseguirlo!!!

Deborah Lawrenson

1,386 days ago

Ánimo mis campeones favoritos 😘😘😘

Eva María

1,399 days ago

Ánimo, ojalá consigas vuestro objetivo, personas como vosotros hacen el mundo mejor

Tomás

1,400 days ago

Ahí va nuestro granito de arena para ayudaros a conseguir vuestro objetivo. Mucho ánimo!

Clara

1,401 days ago

Mucho ánimo y fuerza con esta iniciativa tan bonita y generosa 🙌😘😘😘

Gloria

1,401 days ago

Muchísima suerte. Un beso desde Birmingham xXx

Rocío Plata

1,401 days ago

Gracias por visibilizar y llevar a cabo este reto en apoyo de Duchenne. GRACIAS.

Jenny & Joel

1,401 days ago

Go Christine go!

Helen

1,419 days ago

Hi Christine, sounds like an impossibly hard challenge but know you can do it. Xxx

Ruth Conisbee

1,419 days ago

Amazing! Good luck, I know you can do it!!! And such a great charity. In awe of you both Xx

Ken & Kaz

1,420 days ago

Now that is awesome! - good luck & keep us posted 👍

Mairi

1,421 days ago

You’re crazy 🤣

Luisa

1,423 days ago

Amazing!!! What a good cause, sois la caña!

M Angeles

1,423 days ago

Estáis realizando una labor encomiable, sois admirables.

Francisco Javier

1,424 days ago

Vamos a por ese Reto lo merecéis vosotros y lo merecen ellos.
Muchísimas gracias

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