As our community grows around the world, we at the PURA Syndrome Foundation want to assist our families in every way we can.
We have developed this program to help practical matters in the most direct and effective way possible. Our PURA Ambassadors are representatives for different regions and for specific topics. They will cover many different functions including welcoming new families, helping to answer questions directed to the region or topic and guiding in any way possible, among many others.
At the moment we have started with these regions: France, Germany, Italy, South America, Spain, UK, and US. We also have two topic based Ambassadors, one for siblings of individuals with PURA and another which is called Caring Together. Read about our Ambassadors below and don’t hesitate to reach out!
France: Melany Bueno
Hello, I am Melany and I am the Ambassador for France. I am a midwife and I live in Nimes. I have a PURA brother called Joshi. I hope to help families here in France in any way possible.
Melany can be contacted at: email@example.com
Germany: Jennifer Herold
My name is Jennifer, I am 33 years old and I live in Berlin. In April 2019 our #puraperfect boy Theodor was born. We quickly noticed that something was wrong and seven months later we got the diagnosis PURA syndrome. In October 2021, our second healthy son was born, making Theodor a proud big brother.
So I am a mom, a wife and also a historian and PhD candidate at the University of Potsdam. I am also very happy to be ambassador for the German-speaking countries. I am happy to be able to work with the foundation and bring PURA families together. Together we are family!
Jennifer can be contacted at: firstname.lastname@example.org
Italy: Francesca Greco & Alberto Casalicchio
I am Francesca and I am the Ambassador for Italy. I am a kindergarten teacher, I like spending my free time with my family, doing some sports and with my special friends.
My PURA child is Stefano, he is 4 years old, we recived his diagnosis in July 2019 when he was 9 months. I have two others children, Michele 11 years old and Tommaso 8 years old next August.
With some other Italian families we’re trying to create a Facebook page about PURA Italian Families, where we can talk about everything PURA related in our life. We want to try to create a kind of network between us and we would like to be the first aid in case of new diagnoses in Italy. And of course we would like to be a bridge with the PURA Foundation.
Francesca can be contacted at: email@example.com
Alberto is production manager in a company that manufactures cleaning and sanitizing machinery. He has been working in the electro-mechanical field for over 30 years. He lives in Italy, north of Milan, with his wife Gilda and their children Vera and Riccardo. Riccardo was diagnosed with PURA in 2019 at age 7; he is a very sociable and sweet child that loves animals (he knows all the dogs in the neighborhood), enjoys eating good food and likes to spend time with family and friends. As an Italian ambassador, Alberto has the will to create a network of support, help and information exchange for Italian families with PURA patients.
Alberto è responsabile di produzione in un’azienda produttrice di macchinari per la pulizia e sanificazione. Lavora nel campo dell’elettromeccanica da oltre 30 anni. Vive a nord di Milano, in Italia, con sua moglie Gilda e i loro figli Vera e Riccardo. Riccardo è stato diagnosticato PURA nel 2019 a 7 anni; è un bambino dolce e amante degli animali (conosce tutti i cani del quartiere), ama il buon cibo, è molto socievole e gli piace trascorrere il tempo con la famiglia e gli amici. Come ambasciatore italiano, Alberto ha il desiderio di creare una rete di supporto, di aiuto e scambio di informazioni per le famiglie italiane con pazienti PURA.
South America: Maria Isis Bueno Cerón
Me llamo María Isis Bueno Cerón, soy colombiana y madre de 3 hijos. Estudié Licenciatura en Música en la Universidad del Valle, trabajo como profesora de técnica vocal y me encanta enseñar. La docencia me ha permitido aprender a observar y a conocer mejor a mis alumnos, lo cual disfruto mucho. Actualmente estoy estudiando una maestría en pedagogía musical, lo que me ha permitido ampliar mis conocimientos y mejorar mi labor docente. Me considero una persona alegre, sociable, sincera, muy organizada y cumplida. Otras actividades que disfruto es jugar con mis hijos, aprender cada día con sus ocurrencias y su maravillosa inteligencia y percepción del mundo que los rodea. Es maravilloso estar rodeada de mis hijos y de los niños que enriquecen nuestro existir.
My name is Maria Isis Bueno Ceron, I am Colombian and mother of 3 children. I studied Music at the Universidad del Valle, and I work as a vocal technique teacher so I love teaching. Teaching has allowed me to learn to observe and get to know my students better, which I really enjoy. I am currently studying a master’s degree in music pedagogy, which has allowed me to expand my knowledge and improve my teaching work. I consider myself a cheerful, sociable, sincere, very organized and accomplished person. Other activities that I enjoy is playing with my children, learning every day with their occurrences and their wonderful intelligence and perception of the world around them. It is wonderful to be surrounded by my children and others children who enrich our existence.
Maria can be contacted at: firstname.lastname@example.org
Spain: Montserat Villazon
Mi nombre es Montserrat, y soy madre de Cristina, de 29 años, con síndrome Pura. Tengo estudios universitarios en ingeniería civil, estoy casada con Alfredo y soy madre de otros dos chicos ( Pablo y Ana). Cristina tiene otra enfermedad rara, también genética, distrofia miotonica 1, y su diagnóstico completo ha sido muy complicado. Nuestra lucha, además de diagnosticarla, ha sido y es , la fisioterapia y el trabajo diario de caminar de la mano. Queremos ayudar, impulsando algún otro equipo de investigación médica en síndrome Pura.
My name is Montserrat, and I am the mother of Cristina, 29 years old, with PURA Syndrome. I have university studies in civil engineering, I am married to Alfredo and I am the mother of two other guys (Pablo and Ana). Cristina has another rare disease, also genetic, myotonic dystrophy 1, and her complete diagnosis has been very complicated. Our struggle, in addition to diagnosing her, has been and is, physiotherapy and the daily work of walking hand in hand. We want to help, promoting some other medical research team in Pura syndrome.
Montserat can be contacted at: email@example.com
United Kingdom: Mel Wardhaugh
With a Childcare degree, Mel’s background is early years education and she has worked with children for over 20 years, including running her own Day Nursery. With experience in Special Education Needs, she specialised in speech therapy and behavioural difficulties. Mel gained an abundance of experience and knowledge of professional expertise, before deciding to spend her time raising her family.
Mel has 2 children, the eldest Emily, who was diagnosed with Pura when she was 11 years old. She is aware of the struggles of finding a diagnosis for a child with disabilities after years of tests and specialists involved with helping her. Although recently widowed, days can be hard and challenging raising her girls alone, but considers each day a blessing seeing her girls happy and close. With a younger sister, Charlotte, Emily loves to have her little sister as a young carer, helping with everyday tasks.
Mel can be contacted at: firstname.lastname@example.org
United States: Melissa Vaught
Melissa is a mother of two, her oldest is Taylor who is 27 years old and was diagnosed with PURA Syndrome in 2016. Taylor’s younger brother TJ is a graduate from the University of Washington currently working as a financial consultant. He is the leader of Young Life Capernaum, which is a social group for young adults with special needs. Melissa is a full-time caregiver for her daughter and blessed to have such a special child.
Melissa can be contacted at: email@example.com
Siblings: Chrissie Brock
My name is Chrissie. I’m the older sister to Karen, who received her PURA diagnosis the day before her 41st birthday in 2019. Karen lives in Melbourne where we were both born and brought up. I now live in England with my husband and 2 dogs.
I hope that by helping to set up a siblings network with the PURA Syndrome Foundation, we can create a community for siblings of our wonderful PURA people to meet, share stories and exchange experiences.
Chrissie can be contacted at: firstname.lastname@example.org
We would like to promote the power of us joining together, as families, to support each other and to be there for each other. This could be when you are newly diagnosed, when you are going through a new stage, if you have lost your PURA child or you are simply at a point in your life when you feel like having a community surrounding you could help or to share your experience.
For more information, contact: caringtogether@pura–syndrome.org