Below are some examples of families and parents involved in the fight for the eradication of rare diseases through research. Thanks to them and their efforts, courage and will, we will one day achieve a world where these terrible diseases are cured and the quality of life of those affected and their families improved.
Loli Parra
Socuéllanos- Ciudad Real
Loli is Sergio’s mother. Her son suffers from Ehlers Danlos syndrome, a disease for which there is currently no treatment. When Sergio was born she was adamant that she would not give up trying to help him. To help with the research of Ehlers Danlos syndrome and other rare diseases she decided to organize a flamenco festival in her town, an initiative that was welcomed with the warmth of all her neighbors. Now when the festival is celebrated, she raffles baskets and auctions off paintings and shirts signed by football teams. This is all thanks to the solidarity of businesses, companies, and supporters of her mission. As she acknowledges, “If all parents in Spain did this, many illnesses might have treatments.” Loli knows that the only solution is funding and research projects for Sergio’s illness.
Olga Bienvenido and Jose
La Vall d’Uixó – Castellón
María Encarnación López Álvarez
Cuero Candamo – Asturias
Encarnita is a courageous mother with a son who suffers from muscular dystrophy. She does not rest when it comes to helping finance the research projects that we carry out through the foundation. These projects are crucial and often require commercial activity and dissemination of information about rare diseases.
There are several markets and fairs that María has attended to show and sell her homemade products and goods in order to raise funds for our foundation. Handmade soaps, crochet bracelets, dolls, nativity scenes, and Asturian sweets are some of the products she makes in solidarity with our mission and goals.
Jose María Carrasco
San Pedro del Pinatar – Murcia
The ‘Guillen’ family from San Pedro del Pinatar has a child with muscular dystrophy. Despite this disease that has struck their family, they continue to promote a national solidarity project through SMS donations and host a gala-dinner held annually in San Pedro del Pinatar (Murcia). They now also have started new projects such as solidarity races to raise funds for the research
of rare diseases.
The ‘A coffee for Guillen’ SMS campaign invites you to donate the symbolic amount of the price of a coffee (1.20 euros) through a short message by texting the word FUERZA to 28030. All funds raised are for the purposes of the Isabel Gemio Foundation and the funding for research into rare diseases.
Guillen’s family has promoted this solidarity project at a national level to concentrate efforts and provide more resources for research and the promotion of drug development for rare diseases that have around three million affected in Spain.
Network of Mothers and Fathers in Córdoba
Family Isabel Roig and Jesús Pineda, Volunteer Rafi García, Volunteer Pilar Martínez, Grandmother María Rubiales, Volunteer Araceli Bergillos, Volunteer Mª José García, Volunteers Charo Ortiz and Paco Gómez, Concha Pedraza Family, Family Antonia and Santiago Vallejo… and many many more.
Produced by Antonio Leal
The Spanish Network of Mothers and Fathers in Solidarity is a collective of parents supporting research into muscular dystrophies and other rare diseases that their children and relatives suffer by carrying out various events and activities.
Their mission focuses on creating informational campaigns and raising awareness for muscular dystrophies and other rare diseases. They work to forge a path for more research into these diseases through fundraising campaigns such as grants, concerts, street markets solidarity, festivals, cooperation with other associations, collaborations with schools, solidarity products, among other avenues.
The mothers and fathers in this network, with their tireless work and courage, have currently contributed 49,310 euros to research in rare diseases, but they have no plans on stopping trying to find solutions that bring hope to so many families. If you want to help them, call us or their number below and we will let you know how.
- www.reddepadressolidarios.com
- reddepadressolidarios@gmail.com
- Tlf. 627 80 13 21 – 666 529 995
Paco, Graci, Jorge and Alberto
Miguelturra, Ciudad Real
Paco, Graci, Jorge and Alberto live in Miguelturra (Ciudad Real). Alberto was born in 2003 and in 2007 he was diagnosed with Duchenne muscular dystrophy. His diagnosis has changed the lives of his entire family and friends. However, his and his brother’s character, strength, and sense of responsibility has made them into a great solid pillar for everyone in their lives. They collaborate with the foundation whenever there is an opportunity, from school solidarity markets to solidarity concerts, always in the aims of promoting research and winning this war against Duchenne.
Antonio Alfaro and Trinidad Domínguez
Cheste, Valencia
Antonio and Trini are the parents of Adrián who suffers from Duchenne muscular dystrophy. From the moment of his diagnosis, they mobilized to raise awareness for this rare disease. They recognize that the only way to overcome these diseases is through research. Adrián is currently being treated by Dr. Vilchez at Hospital La Fe in Valencia who is also a member of our foundation’s scientific committee. For this reason, and being supported by his city and its council, on June 7, 2015 Dr. Vilchez organized a special Charity Festival in the Pavilion Cheste Sports Center: “All for Adrian”. All the funds raised from this event went to the research projects against Duchenne muscular dystrophy, in order to find a treatment that makes it possible to cure it.
Not only has this festival been organized, but countless companies and celebrities have donated altruistically or have participated in fundraising in order to be able to raise more funds for research into this disease that will benefit not only Adrián, but every child and person who suffers from it.