Run with Santi for Lorenzo

A campaign by: Santi Güell Fradera
116 Donors
$17,255.00 Raised
$15,000.00 Goal
Raised Percent :
115.03%

115.03% Funded
, Germany
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As a farewell to his 5 years spent in beautiful Bavaria, Santi Güell Fradera is courageously running 50 km around Lake Starnberg.  He is hoping for your support by means of running or cycling with him, cheering him on and donating to a worthy cause.  Santi has graciously and generously decided to run in support of research to cure MECP2 Duplication Syndrome which affects Lorenzo, an 11 year old Starnberg boy.

Lorenzo is a happy little boy that has been given a difficult path in life.  Lorenzo was diagnosed with MECP2 Duplication Syndrome (MDS) at 13 months old. MECP2 Duplication Syndrome is a devastating neurological disorder that is caused by mutations in a gene called MECP2.  The mutation leads to the body not producing enough of a specific protein that’s essential to healthy functioning.  Symptoms are severe and can include developmental delay, absent or minimal speech, recurrent infections, seizures, and more.  Scientific research on MECP2 Duplication Syndrome has made very promising progress in recent years.  Remarkably, MECP2 Duplication Syndrome has been successfully reversed in animal models.  Researchers at leading labs are now attempting, through the latest advances in approaches such as CRISPR gene editing technology, to achieve that same result in people with the disorder.  Funding is urgently needed to continue this exciting research, and that’s why we are asking for your support.

Although the diagnosis was bleak, Lorenzo overcame many obstacles in his first years of life and was able to walk and enjoy many of the things all little boys do.  His first years of life were full of physical therapy and speech therapy, and he was always dedicated and fighting to achieve milestones that came naturally to other children.  He beat all the odds against him until 2017 when he was devastated by epileptic seizures which can be a common symptom of MDS.  With the onset of the seizures, Lorenzo has to be on a serious anti-epileptic drug regime that has affected his physical abilities.  Lorenzo has lost the ability to walk, but continues to work hard on standing in hopes of trying to regain lost skills. Lorenzo loves learning to express himself on his computer, a Tobii eye gaze machine and he loves going to school where he is lovingly referred to by his classmates as “Lorenzi”. He adores his big sister, Sofia who is his biggest fan. His family is hopeful that Lorenzo will be able to regain his lost skills and be freed from his MDS prison which causes his brain to betray his thoughts.

Please consider helping Lorenzo and children with MDS.  Every dollar/Euro donated here through RettGive goes directly to research for MECP2 Duplication with no overhead costs.  No donation is too small.  Thanks for your support!

Donation Amount Minimum amount is $ Maximum amount is $10000
Donation levels

$150

Lorenzo's Superstar

35 Donors

$100

Lorenzo's Hero

34 Donors

$75

Lorenzo's Champion

4 Donors

$50

Lorenzo's Supporter

28 Donors

$25

Lorenzo's Advocate

11 Donors

Name Donate Amount Date
Angela Buma $50.00 August 23, 2021
Bruce & Deniz Botkin $200.00 August 02, 2021
Amber & Joseph Billig $250.00 June 15, 2021
Arianna Panzeri $100.00 June 10, 2021
Ming Lee $150.00 June 10, 2021
linda Johnston Rohrbasser $50.00 June 10, 2021
Steffi & Roland Meinzer $150.00 June 09, 2021
Carol & Chris Rowe $200.00 June 08, 2021
Karina Iversen $75.00 June 08, 2021
Heike Schnell $200.00 June 08, 2021
Lisa Brahmawar $50.00 June 08, 2021
Ana Guisado $50.00 June 08, 2021
Meriel Leppitt $100.00 June 07, 2021
Stefano De Nuccio $75.00 June 07, 2021
JULIA VAN GEND $50.00 June 07, 2021
Gioacchino Cotugno $25.00 June 07, 2021
Arlene Rhatigan $50.00 June 06, 2021
Anonymous $25.00 June 06, 2021
Giovanna Dente $25.00 June 06, 2021
Connie Bateson $100.00 June 06, 2021
Sebastian Dr. Weiss $500.00 June 06, 2021
Gema Quintanilla $50.00 June 05, 2021
Rachel Morello Cole $100.00 June 05, 2021
Maria Rosaria Sportiello $100.00 June 05, 2021
Fabio Della Fiorentina $50.00 June 05, 2021
Corrado Centrone $100.00 June 05, 2021
Matt Lightfoot $50.00 June 05, 2021
Allyson Rhatigan $75.00 June 05, 2021
Vara Bennett $50.00 June 05, 2021
Verdejo martinez $100.00 June 05, 2021
Raffaella Marcuccio $100.00 June 04, 2021
Michele Williams $50.00 June 04, 2021
Nancy van Unen $100.00 June 04, 2021
Tracey Wilson $100.00 June 03, 2021
Martina Wong $50.00 June 02, 2021
Maria Rosaria Albanese $200.00 June 02, 2021
Giuseppe Cotugno $500.00 June 02, 2021
Josie & Matt Bohlman $50.00 June 02, 2021
Robert Brucker $50.00 June 02, 2021
Katia et Vincent Baeyens $25.00 June 02, 2021
Carole Senior $50.00 June 01, 2021
Therese Howley $50.00 May 31, 2021
Henning Schwarz $200.00 May 31, 2021
Sofia Centrone $50.00 May 31, 2021
Cristina Vañó $180.00 May 31, 2021
Pierpaolo Aureli $150.00 May 30, 2021
Elvira Krischke $200.00 May 30, 2021
Carlotta Pellegrini $50.00 May 29, 2021
Ozgun Canbazoglu $50.00 May 29, 2021
Sjoerd Spiekhout $50.00 May 29, 2021
Eda Asli SERAN $25.00 May 28, 2021
Anonymous $1,500.00 May 28, 2021
Cabalian Holding Group $3,000.00 May 27, 2021
Hans-Juergen Bill $50.00 May 27, 2021
Ralf Krischke $100.00 May 26, 2021
Jorge Coca Marqués $100.00 May 26, 2021
Adria Csorgo $100.00 May 25, 2021
Stephanie Stephenson $100.00 May 25, 2021
Robin Seran $300.00 May 25, 2021
Borja Duran $100.00 May 25, 2021
Norah Pope $100.00 May 24, 2021
Robert Franksen $100.00 May 24, 2021
Mark Chlebek $100.00 May 24, 2021
Jenny Wikström $25.00 May 23, 2021
Antonio Guillen $50.00 May 19, 2021
Gene & Erika Seran $500.00 May 19, 2021
Mari-Carmen Laubenthal $50.00 May 19, 2021
HK Lee $50.00 May 18, 2021
Annmarie Geraghty $25.00 May 17, 2021
Anna Inama $25.00 May 17, 2021
Victoria Ryan $50.00 May 16, 2021
Anonymous $150.00 May 16, 2021
Stefania Casagrande $100.00 May 16, 2021
Amanda Emery $100.00 May 15, 2021
Andrea Cornejo $50.00 May 15, 2021
Victor Geus $210.00 May 15, 2021
Martina Delle Vedove $100.00 May 15, 2021
Gözde Dogueri $100.00 May 15, 2021
Diane Honey $100.00 May 14, 2021
Anna Bodero Maccabeo $100.00 May 13, 2021
Ruth Ainley $15.00 May 13, 2021
Alison Fuller $150.00 May 13, 2021
Jenny Petersen $25.00 May 13, 2021
Giovanna Tantardini $100.00 May 13, 2021
charlotte starup $100.00 May 13, 2021
Saman and Andy $150.00 May 13, 2021
Anna Tasias $100.00 May 12, 2021
Harald & Kristin Klug $150.00 May 12, 2021
Sarah Vossoughi $150.00 May 11, 2021
Rita Olsen $250.00 May 11, 2021
Judi and Lee Irwin $100.00 May 11, 2021
Siobhan Pedersen $100.00 May 11, 2021
Errett Wesley McConnell $100.00 May 11, 2021
Matt Irwin $100.00 May 11, 2021
Allison Balus $150.00 May 11, 2021
Silvia Walter $200.00 May 10, 2021
Helen Morris $25.00 May 10, 2021
STEFAN LAMPA $100.00 May 10, 2021
Famiglia Cesaretti $150.00 May 10, 2021
Paloma Esteve $150.00 May 10, 2021
Paloma Esteve $0.00 May 10, 2021
Anneke Breij $150.00 May 10, 2021
Brigitte Gerke-Masson $200.00 May 10, 2021
Susan Conroy $150.00 May 10, 2021
Jaroslava Smutny $75.00 May 10, 2021
roberto grossi $50.00 May 10, 2021
Anonymous $500.00 May 10, 2021
Cerys Jones $10.00 May 10, 2021
Amy Morrison Baker $25.00 May 10, 2021
Dena Mitchell $100.00 May 10, 2021
Anonymous $15.00 May 09, 2021
Sandra Osullivan $150.00 May 09, 2021
Sharon Fahy $50.00 May 09, 2021
Beau Barberis $100.00 May 09, 2021
Santiago Güell $150.00 May 09, 2021
Alessandro Centrone $300.00 May 09, 2021