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Deficit di ADSL, Cerchiamo La Cura!

€6,346 of €50,000 goal

Raised by 47 people in 15 months
Created August 29, 2017

Siamo tutti bambini con una malattia rara metabolica che si chiama "carenza dell'enzima Adenilsuccinato liasi"
Nelle forme più gravi non riusciamo a superare i primi anni di vita, negli altri casi soffriamo tutti di epilessia farmaco resistente, quasi nessuno di noi è in grado di camminare autonomamente e non riusciamo a parlare.
Ad oggi per noi non esiste cura .
Viviamo in diverse parti del mondo, ma i nostri genitori si sono messi in contatto e uniti per sostenere i progetti di ricerca che ritengono piu' validi su questa malattia rara per tentare di trovare una terapia.
Il progetto di ricerca che attualmente finanziamo con questo gofundme è quello diretto dal Professor Francesco Cecconi ,responsabile del centro "Unit of cell stress and survival, Danish Cancer Society Research center of Copenhagen"; il Francesco Cecconi è anche Professore del dipartimento di Biologia dell'università di Roma Tor Vergata in Italia.
Il progetto di ricerca si suddivide in più fasi e per portare avanti la ricerca  sono necessari circa 50'000 Euro l'anno, comprensivi di: spese per l'acquisto  dei reagenti, del rimborso spese per i ricercatori, costi per le prime fasi di sperimentazione sulle cellule e  clinica.
L'intero progetto di ricerca prevede studi che dureranno per un periodo di 4 anni.
Per l'anno 2018 abbiamo raccogliere EUR 50.000!
Ad occuparsi della raccolta fondi per il gruppo sono io, Benedetta Contardi, mamma di Carola, una bambina con adsl Deficiency, viviamo a Roma .I soldi che raccogliamo li bonifichiamo periodicamente all’universita’ di Tor Vergata di Roma al laboratorio del professor Cecconi, esclusivamente per la ricerca su carenza di adsl.
La ricerca per noi è l'unica possibilità per poter sperare di avere una cura e migliorare così la nostra vita.
Grazie del vostro aiuto da tutti noi bambini provenienti da tutte le parti del mondo: Marta (Poland), Avery (USA), Matthew (Ireland), Jude (Israel), Gia (USA), Szymon (Poland), Carola (Italia), David (Poland), Jack (USA), Sydney e Carson (USA), Hamish e William (Australia), Cyrus (USA), Taft (USA) Gabriela (Brazil)

We are children with a rare metabolic disorder called "Adenylosuccinate Lyase Deficiency". In the most severe forms, we can't survive the first years of life. In other cases, we fight against drug resistant epilepsy, while we struggle to learn to walk and talk. There is currently no viable cure or treatment for our condition.

We live in different parts of the world, but our parents have come together to support the research projects that show the most promise in understanding this disorder and developing an effective therapy.

All money raised from this fundraiser will be donate to Professor Francesco Cecconi, head of the Center for Cell Stress and Survival and of the Danish Cancer Society Research Center of Copenhagen. Francesco Cecconi is also a Professor of the Department of Biology at the University of Rome Tor Vergata in Italy.

The research project is divided into several phases, and to continue the research we will need approximately 50,000 Euros a year, including: reagent purchase costs, reimbursement of costs for researchers, costs for early stages of research on cells and clinical trials. The entire research project includes studies that will last for 4 years.

The first year of the study is already underway, but for the year 2018 we need to collect 50,000 Euros and the help of all our friends, acquaintances, and new supporters is crucial to us!

These research studies are the only chance we can hope to develop a treatment and thus improve our the quality of our lives. These children from all over the world thank you for all your support: Marta (Poland), Avery (USA), Matthew (Ireland), Jude (Israel), Gia (USA), Szymon (Poland) (Brazil), Jack (USA), Sydney and Carson (USA), Hamish and William (Australia), Cyrus (USA), Taft (USA), Gabriela (Brazil).
+ Read More
Avery 2 years old- Louisiana USA
Matthew , 14 years old , Dublin, Ireland
Marta, 4 years old, Poznan, Poland
Christopher, 5 years old from New York.
Zelya, 2 years old Québec/Canada
Jude, 7 years old, Israel
Michael, 8 years old, England, UK
Sydney, 10 years old Buffalo, NY
Carson, 7 years old, Buffalo,NY
Willa, 3 years old, Nashville, TN
Jack, 8 years old ,Upstate New York
Simon, 8years old, Wejherowo, Poland
Derek, 12 years old Québec canada
Océane, 10 years old, Québec, canada
Cyrus, 3.5 years old, California, USA
Gia, 7 years , Phoenix, Arizona USA
Marika, was only 4 Month, Germany
Carola, 12 years old, Roma,Italy
Ryan, 9 months, Doha, Qatar
Parley, 6 Years Old. Houston, TX
Alexander, 4 Years Old, Houston, TX
David, 13 Years Old, Wieluń, Poland
Georgia, Tacoma, WA (I U.S.)
Bianca, 4 years old, São Paulo, Brasil
George, 25, California,USA
Alexander, 26, California , USA
CATHLIN, 3yrs old
Jack, 4 years old, England
Miłosz, 15 Years Old, Skierniewice, Poland
William, 9 yrs old , Victoria, Australia
Hamish, 9 yrs old, Victoria, Australia
+ Read More
Thanks for helping us!
Avery 2 years old- Louisiana USA
Matthew - 14 yrs old - Dublin, Ireland
Marta 4 years old, Poznan, Poland
Christopher 5 years old from New York.
Zelya 2 yrs old Québec/Canada
Jude, 7 years old, Israel
Michael, 8 years old from England, UK
Sydney 10 years old Buffalo, NY
Carson 7 years old Buffalo,NY
Willa - nearly 3 years old - Nashville, TN
Jack, 8 years old from Upstate New York
Simon, 8years old, Wejherowo, Poland
Derek, 12 years old Québec canada
Océane, 10 years old Québec, canada
Cyrus Lee - 3.5 years old. California, USA
Gia 7 years , Phoenix, Arizona USA
Marika, was only 4 Month , Germany
Carola, 12 years old, Italy
Our journey with Adsl deficiency
+ Read More
An article of the online review “FarmaMagazine” about Carola and Adsl deficiency
+ Read More
Read a Previous Update

€6,346 of €50,000 goal

Raised by 47 people in 15 months
Created August 29, 2017
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SP
€50
Shemy Paul
7 days ago
€100
Kari Payne Brown
12 days ago
FG
€2,000
Frida Giannini
13 days ago
AC
€15
Alessio Cozzolino
2 months ago
ŁS
€10
Łukasz Sujka
8 months ago
GR
€200
Giovanni Roma
8 months ago
€100
Federica Spagnesi
9 months ago
GR
€100
Giovanni Roma
9 months ago
€100
Gedy Moody
9 months ago
€10
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9 months ago
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