On May 19th we had the immense honour to be received in audience by the Honorable President of the Parliament of Catalonia Ms. Nuria Gispert. During the meeting, we exposed the importance of early diagnosis of the most serious forms of PID to improve the survival of the affected children handing over a letter asking for newborn screening of Severe Combined Immunodeficiency to be included in the universal newborn screening in Catalonia.
La Caixa helps Hospital Universitari Vall d'Hebron to bring psychological support to PID affected children and their families.
Project: "I have PID. I'm not alone"
"La Caixa" Foundation awarded a grant to provide expert psychological services to children affected by PID and their families at Hospital Universitari Vall d'Hebron. The project, called "I have PID. I am not alone" and presented jointly by the ACADIP and the BCN-PID Foundation, seeks to accompany the patients and their families during the entire process of the disease. This psychological support begins at diagnosis but needs to continue all along the evolution of this chronic disease and, in the more severe forms of PID, during extremely stressing moments such as stem cell transplantation period.
Charity dinner for PID
On July 9th, under the wonderful setting of the gardens of "Maria Reina de Pedralbes", Barcelona, a charity dinner took place to benefit the BCN-PID Foundation. The event was held by Events@Help. During the dinner, enlivened by journalist Pilar Calvo, the prizes "In Positive" were awarded for first time.
Dr. Andrea Martin from UPIIP and Secretary of BCN-PID Foundation gave one of the awards and explained to all attendees what the primary immunodeficiencies are and the tasks of our foundation.
It was an excellent dinner in an incomparable place and a very supportive context.
Benefit concert for PID - Marimurtra Gardens
On Saturday 1st of August the live music festival at Marimurtra Gardens, in Blanes, was opened with a benefit concert for the BCN-PID Foundation. More than 180 people enjoyed the successful songs of two great groups "Boxets" and "Enric Verdaguer" in the wonderful Marimurtra Botanical Garden. The evening was even more special than expected: Boxets had prepared a wonderful surprise to all of us, the song "Colour Bubbles" written and composed especially for us and devoted to each of the children suffering from PID. It was a magical night.
Click on the picture to watch a video summary of the event.
JMF - Vicki and Fred Modell - New friends of the BCN-PiD Foundation
The Jeffrey Modell Foundation (JMF) joins our campaign as a new friend of the BCN-PID Foundation. Vicki and Fred created this foundation in memory of his son Jeffrey, who died at 15 years old due to a primary immunodeficiency. Nowadays, the Jeffrey Modell Foundation is one of the greatest institutions that fights to offer help and to give hope to children and adults affected by a primary immunodeficiency. They are our model in many aspects and a reference to all PI foundations. That is why, it is a real honour that they support our campaign becoming one of the “missing pieces” in the fight we share.
Collaboration of La Caixa Montbau
"La Caixa" collaborates with the BCN-PID Foundation in support tasks to pediatric patients with PID and their relatives who are treated in the Pediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) of the Hospital Universitari Vall d'Hebron.
Broadcasting in the media
Having as a main goal to spread the awareness of primary immunodeficiencies, “All with Dídac” campaign appeared at “RNE radio 4”, “Radio Estel” and “Barcelona TV”. In this last media, Dr. Pere Soler, an investigator at the “Infection in Immunocompromised Pediatric Patients” group of Vall d’Hebron Research Institute (VHIR) speaks about primary inmunodeficiencies, all their different groups and the alarm signs. He points out the importance of newborn screening and the possibility to establish it in our country in the following years. Finally, he explains the SMS campaign “All with Dídac” and how it helps to support the first Biobank at VHIR that collects samples of patients with primary inmunodeficiencies, opening a wide range of possibilities in the research field.
Click the link to watch the entire interview.
OTHER NEWS... NON-STOP
Armand Monleón – BCN-PID Foundation Ambassador in the rally motor world championship.
Family Party at Jesuïtes Sant Gervasi School, Barcelona – April 22nd.
School Party at Bernat de Riudemeia School, Argentona – May 30th.
Synchronized Swimming Kallipolis Festival, Barcelona - June 7th.
There are so many people that want to join us as new friends of BCN-PID Foundation. Among of them, we highlight great artists like Estopa, Els Amics de les Arts,Pep Bou or El Mago Pop; elite athletes like Anna Tarrés, FCB Handball team orArmand Monleon; and oustanding journalists like Martí Gironell and the team from the morning program Matins de TV3.
More than 20 people that want to show their support in favour of the primary immunodeficiencies and our Foundation.
SMS CAMPAIGN FOR PID Vall d'Hebron Research Institute (VHIR)
A new SMS campaign has been released from the VHIR to get funds to benefit PID research. From our Foundation, we encourage you to collaborate in this initiative. Send a SMS with the word “DIDAC” to 28014.
Now you also can do research
HELP CHILDREN LIKE JANA Teaming Group
A crowdfunding campaign by "Teaming Group”. For only 1€/month you can help and support PID research at Vall d’Hebron Research Institute (VHIR).
It’s almost priceless to make a research contribution… + Info
SUPORT A FUNDACIONS / ASSOCIACIONS
Vall d'Hebron Research Institute (VHIR) has new wesbsite, with new and very interesting sections. We encourage you to have a look: www.vhir.org.
Among other activities, in May they organized the Solidarity Research Party with activities addressed to children, scientific workshops and musical performances.
This last September 20th took place the Nick Horta Race to raise funds for research in VHIR. Some colleagues from Hospital Universitari Vall d’Hebron run with the Barcelona PiD Foundation t-shirt, making us presents in the race.
IPOPI is the association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide.
Next 5-6 November, IPOPI organizes IPIC 2015, an international scientific meeting focusing on the clinical management of Primary Immunodeficiencies (PIDs). Its programme is clinically orientated and prepared with the input from the key PID stakeholders: doctors, patients and nurses.
More details are available at www.ipic2015.com
On September 5th, ACADIP organized its annual one-day activity for children and teenagers affected with PID. This year, they spent the day at the Tibidabo Park. The Catalan Association of Primary Immunodeficiencies carry out several awareness and fundraising campaigns throughout Catalonia with the aim to raise funds for research.
AEDIP, the Spanish Association of Primary Immunodeficiencies, on 22th April held a PID awareness day as a part of the World PI Week 2015.
In this event, that took place at Hospital Miguel Servet (Zaragoza), Dr. Martinez Gallo from Hospital Universitari Vall d'Hebron spoke about genetic diagnosis of PID and its implications in genetic counselling.
AEFAT is the Spanish Association of Patients and Relatives with Ataxia - Telangiectasia (AT), a rare degenerative disease that affects various organs of the body including the immune system. Among other acts of solidarity, in June AEFAT held a solidarity race in Malaga and has now organized the third edition of a folk music charity festival. The goal is to collaborate to fund the research on A-T that is being carried out for a couple of years at the University of Seville.
FORMACIÓ I RECERCA
AKKI MEETING IN FRANKFURT 13-14 November - Frankfurt, Germany
The German Society of Immunology organizes a meeting on Autoimmunity and Immunology/Immunodeficiency on November in Frankfurt. The meeting is addressed to clinicians and clinical scientists.
For Registration and Abstract Submission please contact Teresa.firstname.lastname@example.org
EBMT IEWP ANNUAL CONFERENCE 16-18 October - Sevilla, Spain