Summer Camp | ASEM Federation, Spain
ASEM Federation consists of 23 associations with over 8,000 members, representing more than 60,000 people with neuromuscular diseases throughout Spain. The 2015 STRIVE Award was presented to ASEM Federation in support of their Summer Camp project – the only one of its kind in Spain – which will be held from 10-17 July 2016 in Vilanova de Sau, Barcelona.
At the ASEM Summer Camp, 46 children between the ages of 7 and 18 will spend a week enjoying fun activities while surrounded by nature and mountains. The group will comprise both children with a neuromuscular disease, including DMD, and those unaffected by a neuromuscular condition, which will create a unique, inclusive and integrated environment. All activities, including water games, football, basketball, art workshops and a gymkhana, will be adapted to the ability of the children. A “Night of the Detectives” will also feature on the programme, whereby children and monitors will dress up to recreate a classic detective story.
“The ASEM Summer Camp promotes the integration and empowerment of children with DMD, providing a unique opportunity to enjoy a week without family/carers, surrounded by other children who have the same needs as them. The children get to share experiences and activities that have been designed especially for them in order to have the best experience. Inclusion of children who are not affected by neuromuscular conditions removes the isolation and exclusion often felt by children with DMD. This integration also allows education in values, overcoming prejudices and stereotypes, resulting in a constructive coexistence of friendship and care amongst all the children.”
Cristina Fuster Checa
The ASEM Summer Camp will not only provide a wide range of benefits for the children, but also for DMD families, providing parents and carers with a break from their full time roles and improving family relationships. The ASEM Summer Camp will also serve as a platform to further build the Spanish DMD community, connecting families and offering the opportunity to exchange experiences.
Standard of Care Guidelines | Dutch Duchenne Parent Project, Netherlands
The Dutch Duchenne Parent Project (DPP NL) was founded by parents to accelerate and improve research into DMD and share information with parents of children with DMD. The organisation has contributed much to the patient community – in 1997, DPP NL established the first ever European Guidelines for Optimal Care for Duchenne Patients. The STRIVE award was presented to DPP NL in support of their plans to update the current Standard of Care Guidelines and make it more accessible to everyone as the organization recognized that parents and careers play a critical role in ensuring young people with DMD get the best possible care and treatment.
An expert committee was set up to review the current Standard of Care Guidelines and update them to include emergency and adult care information. The final guidelines will also contain recommendations from the Centers for Disease Control and Prevention (CDC).
As part of the update, DPP NL also wanted to make the guidelines more visual so they are easy to understand and more memorable. A nationwide design competition was launched earlier this year, and due to the high standard, not one but five winners were chosen, with two of the winners being DMD patients themselves.
“Our design competition showed how difficult it is to visually express some of the recommendations in the Standards of Care Guidelines, which is why it is so important that everyone affected by and treating DMD needs to understand them”
President of Dutch Duchenne Parent Project and Chair of the worldwide United Parent Projects Muscular Dystrophy (UPPMD)
DPP NL will now work with the winners and a design company to create the final guidelines. The final Standard of Care Guidelines will be shared on World Duchenne Awareness Day 2016.
Assistant Dog Program | Little Steps Association, Israel
Little Steps Association is a non-profit organization founded in Israel by parents of children with Duchenne and Becker muscular dystrophy. It provides support to these children and their families, who have to cope with the physical and psychological difficulties caused by the disease, and its ultimate aim is to find a cure for Duchenne.
The 2015 STRIVE was presented to Little Steps Association for their pioneering assistant dog program, Friends for Life, to support and provide companionship to boys and young men with DMD. The specially trained dogs assist their new owners with day to day tasks like helping them get their shoes and socks off and pulling out clothes from the wardrobe to help them get changed, walking up stairs, opening cupboard doors, and turning the light switch on and off, to enable them to be more independent. The dogs are also helping patients with physiotherapy sessions and providing medical assistance.
The feedback from the families to date has been tremendous,
with one parent explaining that the addition of dog Pluto to their family brought them hope. Not only do the dogs help lessen some of the burden of Duchenne on the families, they’ve also become the patient’s loyal friend, helping them to feel less isolated because of their condition.
The Friends for Life program has also had a profound effect on all of the dog trainers and fosterers – seeing how the dogs have helped these patients in their homes and the significant improvements brought to their lives has affirmed that what they are doing is so important.
“Seeing the smiles and the patients and families’ feelings of satisfaction and happiness, that’s when it makes you realize that this program has been the right thing to do. It melts our hearts also seeing the dogs choose their humans and the genuine love between them. Our hope is for us to be able to continue expanding this program to other patients so that we can help bring some joy back into these families’ lives.”
Chief Executive Officer
Resource Center | Muscular Dystrophy Foundation India
Muscular Dystrophy Foundation India (MDF India) is run exclusively by parents of children with Duchenne/Becker MD, and a limb-girdle muscular dystrophy (LGMD) patient, making it a patients’ organization in the truest sense of the word. MDF India aims to ensure that MD is not a condition without hope, and that every child with DMD can access the care, management, treatment and social support they need.
MDF India was presented with a STRIVE Award for its ambitious project to establish a resource center (MDRC) in Tamil Nadu, India, providing DMD diagnosis and training, and a thorough early intervention caregiver training program comprising different modules such as physiotherapy and yoga. The progress of MDRC has exceeded the group’s expectations, despite the challenges they faced, such as training mothers as carers and physiotherapists, finding the best-suited experienced therapist, and locating suitable premises. Since its launch in late December 2015, MDRC has already completed four sets of training and early intervention support, benefiting a total of 32 children and parents. The caregiver training has resulted in immediate improvements in the children’s condition, with improvements in the 6-minute walking test (6MWT) observed, and 17 children have been diagnosed through the early intervention program.
Training parents on the care and management of DMD is a truly unique concept in India. Often parents in India feel helpless from the point of diagnosis and struggle to cope with their child’s condition. Consequently, parents in India have welcomed the training that MDRC provides, recommended MDRC to fellow parents and requested refresher courses. To meet this demand, MDF India is already looking into how MDRC can be expanded. MDRC has also helped create a sense of community among families and empowered them to live better lives.
Through MDRC, MDF India has also successfully intervened early in three cases of child neglect, helping to place them in the primary care of extended family members, ensuring their parents are being monitored regularly for the children’s safety, and providing intensive counselling to the families. MDRC is also prepared to facilitate the re-homing of children abandoned by their families.
Three national and eight local advocates have also been identified and are being trained by MDRC to help tackle the social stigma attached to DMD and raise awareness of the needs of these children and their families in India.
“Nothing could surpass the satisfaction we gain from seeing immediate improvements in the condition of children with DMD and the stronger emotional connections they form with their mother as the primary caregiver. But our work is far from done. We are grateful that the STRIVE award has further strengthened MDF India’s credibility and we are being increasingly approached by other patient support networks for collaboration, which we hope will open more doors to allow us to do more for the community.”
Executive Director of MDF India
Carrier Awareness Campaign | Parent Project Muscular Dystrophy, United States
Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the U.S. focused on finding a cure for Duchenne muscular dystrophy. The goal of the organization’s program is to develop an awareness campaign about carrier issues both for at-risk women and the health care professionals that provide care for this community. The ultimate goal is for the community to have a better understanding of who is at risk of being a carrier, what the process of carrier testing involves, reproductive risks and choices and the potential risks to women’s health.
Since receiving the STRIVE award, PPMD has completed the delivery and analysis of a survey designed to identify the educational resource needs of the provider and family communities regarding carrier issues. A total of 444 responses were collected, providing vital information about educational interests, learning styles, preferred delivery methods, and current knowledge of DMD. The Carrier Advisory Committee reviewed the key findings from the survey and drafted a resource development plan, which will now be implemented. PPMD intends to develop online, print and multimedia educational resources covering topics ranging from natural history and symptom management to genetic testing logistics to coping and emotional support as part of the Carrier Awareness Campaign.
“By actively seeking feedback from our community, we are affirming that their voices matter, that their opinions are being heard, that we are dedicated to supporting them. We hope that through this campaign, we are supporting the community by providing what they have asked for: easily accessible and organized materials to read themselves, provide to family members, and discuss with doctors to increase awareness of carrier issues. I believe this will lead to improved health and happiness for families.”
President and Founder
PPMD has already started seeing the impact their Carrier Awareness Campaign has had. In the first five months of 2016, the organization had an average of 7 new carrier registrants in their patient registry, DuchenneConnect, per month, compared to an average of 5 new registrants per month in the same months of 2015. A follow up survey is planned following the completion and dissemination of materials to measure the change in awareness levels.
Pictured from left to right: Kathi Kinnett, Pat Furlong, Will Nolan, Annie Kennedy, Ryan Fischer