WHAT'S HAPPENING
SPECIAL WEEKEND PLANNED FOR RARE DISEASE PATIENTS AND FAMILIES
While each patient has a unique story, individuals and families battling rare diseases often experience similar challenges, including a long and difficult road to diagnosis, feelings of isolation, and questions about treatment and research, just to name a few.
RARE CARE: The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection — in an atmosphere of support and understanding — plus fun!
This summer, rare disease patients and families will have the opportunity to connect with one another, as well as with medical professionals, experts and supporters over a very special weekend in Houston, Texas.
As a means of sharing resources and information and helping to forge invaluable connections, the National Organization for Rare Disorders® (NORD) has announced a meeting for rare disease patients, caregivers and the medical community, which will be held in a different location every year. The 2019 Living Rare, Living Stronger NORD Patient and Family Forum will take place June 21 - 23 in Houston. In addition, the 2019 Rare Impact Awards, honoring the individuals, groups and companies making strides in support of rare disease patients, will take place on June 22 in conjunction with the Forum.
NORD is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90 percent are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.
Living Rare, Living Stronger's agenda features sessions in which patients and families can gain practical tools for living their best lives with rare diseases, with tracks provided for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. It is also an opportunity for bonding and fun, with kids programming, a welcome BBQ, a wellness room with yoga and workshops.
"Serving patients and families by acting as a connector to support and information has long been integral to our mission at NORD," said Peter L. Saltonstall, President and CEO of NORD. "With Living Rare, Living Stronger, we are excited to be bringing back the type of patient and caregiver focused live programming that was one of our hallmarks for many years."
On Saturday, June 22, 2019, as part of the Living Rare, Living Stronger NORD Patient and Family Forum, NORD will host its annual Rare Impact Awards, bringing attendees together to celebrate those who are making extraordinary contributions to the lives of rare disease patients and caregivers. The Rare Impact Awards will take place at Space Center Houston, the Official Visitors Center of NASA Johnson Space Center.
- The vision that drives all NORD initiatives is:
- • A national awareness and recognition of the challenges endured by people living with rare diseases;
- • A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;
- • Access for all patients to the diagnostics and therapies that will extend and improve their lives.
- • A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.
- For more information and to register for the Living Rare, Living Stronger NORD Patient and Family Forum, visit rarediseases.org/living-rare-forum.
JEAN VANIER HAS PASSED AWAY
FOUNDER OF L'ARCHE COMMUNITIES FOR ADULTS WITH DISABILITIES
L'Arche USA recently announced the death of founder Jean Vanier, who died on May 7 in the Maison Médicale Jeanne Garnier. He was 90 years old.
"Jean has left an extraordinary legacy," said L'Arche International Leader Stephan Posner. "His community of Trosly, the communities of L'Arche, Faith and Light, many other movements, and countless thousands of people have cherished his words and benefited from his vision."
In 1964, through the influence of his friendship with a Catholic priest, Father Thomas Philippe, Vanier invited two men with disabilities, Raphael Simi and Philippe Seux, to leave the institutions where they lived and to share their lives with him in a house in Trosly-Breuil, France.
THE HEART GIVES AND RECEIVES: Mr. Vanier, front right, is shown with core members of L'Arche International, L'Arche grew naturally as a result of the mutually transformative relationship between people with intellectual disabilities and those who helped them.
There, in that small home in Trosly-Breuil, Vanier's initial urge to "do something for" Raphael and Philippe grew to become a commitment to "being with" and "friend to" these two men. With that shift in heart and consciousness, a core belief of L'Arche emerged: that strength is revealed through weakness and human vulnerability, which given room to grow in trust, creates community. And, Vanier understood, the desire to love and to be loved is something every person longs to experience.
L'Arche now includes more than 150 communities in 38 countries around the globe. Its more than 10,000 members welcome and celebrate people with intellectual disabilities, fostering growth and allowing everyone to share their talents and abilities. L'Arche communities in the United States provide homes and workplaces where people with and without intellectual disabilities live and work together as peers; create inclusive communities of faith and friendship; and transform society through relationships that span social boundaries.
In recent decades, after he retired from his role at L'Arche, Vanier focused more on his personal work: sharing a message of unity, dignity, and diversity. Jean entrusted the organization's legacy to the people who define what L'Arche is today, its members and communities. They embody the organization's founding values: honoring the sacredness and unique worth of every individual. L'Arche's diverse membership continues the mission of building a more inclusive and humane society across the globe.
After its founding in 1964, L'Arche grew quickly across France and the world and continues to welcome people with and without disabilities from diverse religious and cultural contexts.
In addition to his work with L'Arche, Vanier co-founded Faith and Light and inspired the creation of many other organizations. He influenced thousands of people around the world and published some 40 books, including on how people with intellectual disabilities make essential contributions to building a more humane society.
Visit jean-vanier.org/en to learn more about the life and legacy of Jean Vanier.
PAL-O-MINE HOSTS SIX PART EQUINE PROGRAM "AN EVENING WITH HORSES"
Pal-O-Mine Equestrian, Inc. a private, not-for-profit organization providing a comprehensive therapeutic equine program using horses to facilitate growth, learning and healing for children and adults with disabilities, recently held a six-part series titled, "An Evening with Horses"
The series was designed for groups of individuals with disabilities ages 18 years and older. "An Evening with Horses," which took place on six Wednesdays in February and March from 4:30 to 7:30 PM, provided life skills training, along with the opportunity to enjoy an equine-themed movie and dinner with their peers.
RIDING HIGH: Pal-O-Mine Equestrian was founded as a therapeutic horseback riding program for individuals with disabilities and other vulnerable populations in order to facilitate growth, learning and healing.
Pal-O-Mine founder and CEO Lisa Gatti explained the program saying, "We designed the 'Evening with Horses' program as part of our larger program, Restore to Balance" where individuals can participate in something that is both educational and fun. Learning essential life skills is as important for individuals with disabilities as it is for all of us. Our event starts with the group preparing dinner together, setting the table, and then cleaning up. This life skills building is followed by the group settling down to watch a horse-themed movie after which a discussion is held about the movie; the main characters, the herd and their temperaments and emotions."
Gatti noted that the group size is kept to between five to ten stu dents so that each participant can receive the attention he or she needs both in the life skills part of the evening and in the group discussions following the movie.
Founded in 1995 by Lisa Gatti, Pal-O-Mine is a private, not for profit organization providing a comprehensive therapeutic equine program using horses to facilitate growth, learning and healing for children and adults with disabilities, as well as those who have been abused or neglected, veterans and the economically compromised. Pal-O-Mine offers a broad range of programs many of which involve the organization's herd of therapy horses. Pal-O-Mine relies on grants and contributions from private citizens, foundations and businesses to help raise funds. Towards this goal, Pal-O-Mine has an "Adopt a Horse" program to help underwrite the $8,000 per horse per year expense it incurs, a Wish List for various items required to sustain its services, a PaveIt-Forward brick pavers purchase campaign, and various fundraising events such as its annual golf outing.
For more information on Pal-O-Mine, visit pal-o-mine.org or call: 631-348-1389.•