(Midlothian, VA – Sept 24, 2018) – Patient Services, Inc. (PSI), the nation’s first non-profit patient assistance program, and their supporters gathered at the Newseum in Washington D.C. recently for an Evening of Hope.
An outdoor patio overlooking the capital building was the perfect setting as PSI supporters as well as patient, advocates, and caregivers arrived for a night to honor the many champions within the rare disease community.
On a Facebook post celebrating the special evening, PSI stated, “You are the reason behind our drive, our fight & our passion. It was our absolute honor to celebrate you all.”
What Is Evening Of Hope?
The Evening of Hope acknowledges, celebrates and honors patient champions in the chronically-ill community. Guests who attend can expect an extraordinary night with delicious food that reflects the fall season, cocktail hour, an exemplary company, education, and entertainment.
Patient And Caregiver Offer Stories of Hope
Throughout the night, several patients, parents, and caregivers took the stage to share their story as well as how much the work of PSI has meant to them. Krystal and Shane Rushing was one of those stories. As parents of a PSI DiGeorge Syndrome patient, Krystal thanked Patient Services Inc., “I could not believe there was such an organization as PSI. Thank you all for the blessing you’ve bestowed upon our family and so many others.”
Others echoed that same sentiment. Anne Bruns, a parent whose son was diagnosed with aHUS, added, “When you’re struggling with help, the last thing you want to do is struggle with finances. PSI and the incredible donors have made our lives manageable.”
Father And Daughter Battle Same Rare Disease
When James Shadinger was diagnosed with aHUS, he joined his own daughter, who had previously been diagnosed with the same rare disease as the only family in North America with a parent and child with the disease.
James spoke on the importance of the patient voice offering song lyrics that challenged those in attendance. The lyrics were from Australian artist Brooke Fraser and her song Albertine about her trip to Rwanda. The lyrics, “I have seen, now I am responsible” serve as a challenge for us all.
Evening Of Hope Honoring Community Champions
During the event, PSI honored two individuals with awards to honor their tireless efforts on behalf of the rare disease community. The first award recipient of the evening was Stephanie Lapidow, who was awarded the Extraordinary Support Award. In her remarks, Stephanie shared, “Working with PSI has been one of the most extraordinary experiences of my life.”
The second award of the evening was for the PSI Bradley Cross Lifetime Achievement Award which went to Joe Pugliese, President of the Hemophilia Alliance.
An Emotional Tribute
A centerpiece for the evening came when PSI’s Mandy Herbert, Director of Community of Outreach, offered a heartfelt and emotional tribute to inspirational speaker and friend, Claire Wineland. Wineland had been scheduled to speak at the event, but tragically passed away weeks prior shortly after receiving a lung transplant.
“The world lost a beautiful soul. Claire was an inspiration to so many. Making a huge impression on this world. She faced life’s challenges with such grace, love, humor, and determination.” Mandy said.
Shortly after, a moment of silence.
Commitment to PSI and Rare Disease Patients
The evening was made possible thanks to PSI’s generous event sponsors listed below. “Thank you for the opportunity to participate and attend PSI’s Evening of Hope. We really enjoyed the evening and opportunity to learn more about how PSI is changing the lives of the patients it serves and in fulfillment of its mission. It was a truly enlightening and moving evening.” said Cathy Fregelette with BroadPoint, a Bronze Sponsor.
Who Is Patient Services Incorporated?
PSI was founded in 1989 by Dana Kuhn, Ph.D., and is the nation’s first patient assistance charity.
Patient Services Incorporated provide financial support and guidance for qualified patients with specific, rare chronic diseases. Through PSI assistance programs patients and their families rediscover hope and health.
PSI’s mission is to advocate for greater access to affordable health care and treatment for patients with rare, chronic conditions. Working on both the state and federal level, the department combines expertise in legislative and regulatory affairs with a passion for advocacy ensuring our patients’ voices are heard and patient assistance is protected.
In 2017 alone, PSI assistance reduced spending in Medicare by generating $33.9 million in net federal Medicare savings. Since 2013, that figure increases to $146 million in Medicare savings.
Learn more about the impact of PSI from a recent Avalere Health Analysis here.