“We are proud to support the efforts of important organizations like NORD, and to have an employee base so willing to give to the communities and charities that matter to them most.” –Tom Rusin, CEO of HomeServe USA
Earlier this month, HomeServe USA announced a donation of over $26,000 to the National Organization for Rare Disorders (NORD). This extraordinary donation from HomeServe leadership and individual employees was given to support NORD’s goal of advocating on behalf of the 30 million Americans who are affected by rare diseases or conditions, like Liam Cruz, son of HomeServe employee William Cruz.
Workers at HomeServe, a leading provider of home repair solutions, participated in office fundraising initiatives and collected more than $12,000 to support NORD, which was then matched by the Company and followed by additional donations – all as part of a recent “Charity Pitch” contest held by the Company.
The pitch to support NORD was presented by William Cruz, whose 4-year-old son Liam was recently diagnosed with Allan-Herndon-Dudley syndrome, a rare disorder affecting brain development. William chose to support NORD after his son’s diagnosis, as a way to help NORD provide a voice and assistance for his family and others. HomeServe’s campaign to support NORD broke previous employee-driven fundraising records set at the Company.
Cruz said, “There are only 80 recorded cases worldwide of children with AHDS. This disorder is so rare that there is no known treatment or cure, other than constant physical, occupational, and speech therapy. It is so rare that
many services, equipment needs and medical bills are denied, as insurance companies do not recognize this disorder.”
He added, “Liam’s future is still unclear to us; however, his unwavering spirit and loving personality is what keeps us driven to find a cure or treatment.”
Their story began in July 2011, when Liam Jacob Cruz was born, weighing 7lbs and 19 inches long, at Greenwich Hospital in Greenwich, Conn., and discharged with a clean bill of health.
“At the age of 6 months, we began to notice that Liam was not reaching his developmental milestones, such as holding his head, rolling over from his belly on to his back, sitting up on his own and bringing his hands to his
mouth. Liam’s appetite was very poor as well. It was then that we brought our concerns to Liam’s pediatrician who suggested that we have Liam evaluated with an Early Childhood Intervention Specialist, as well as conduct a battery of tests to determine if something was off neurologically, metabolically, etc.”
So followed a long and hard four-year struggle to find Liam’s diagnosis, an experience all too common in rare diseases – and one reason why NORD has embarked on a multi-front campaign to promote rare disease awareness among health care professionals and medical students – that has included the family uprooting from New York to Florida, grappling to find insurance coverage, and looking for seven new specialists to provide their son’s care.
Allan-Herndon-Dudley syndrome is a rare X-linked inherited disorder of brain development that causes moderate to severe intellectual disability and problems with movement. This condition, which occurs almost exclusively in males, disrupts development from before birth. Most children with AHDS have weak muscle tone (hypotonia) and underdevelopment of many muscles (muscle hypoplasia). As they get older, they usually develop joint deformities called contractures, which restrict the movement of certain joints. Abnormal muscle stiffness (spasticity), muscle weakness, and involuntary movements of the arms and legs also limit mobility. As a result, many people with AHDS are unable to walk independently and become wheelchair-bound by adulthood. Read more about the family’s story.
HomeServe’s Charity Pitch contest was modeled on the premise of a popular reality TV show and encouraged individual employees or teams to present a case for the charitable cause most meaningful to them to win the financial support of their peers and the Company. The presentations were subsequently posted online and the entries were set to a companywide vote. Among the 15 charitable organizations shared in employee presentations, NORD received the highest number of votes and is the first to receive a collective donation from HomeServe and its employees.
“What was so great about this process was it provided employees a platform to share personal stories about the organizations they care most about, which made it so much more meaningful and engaging for everyone. This approach really moved people to action and took our philanthropic program further than we ever expected,” said Tom Rusin, CEO of HomeServe USA. “We are proud to support the efforts of important organizations like NORD, and to have an employee base so willing to give to the communities and charities that matter to them most.”
Representatives from NORD and HomeServe, both headquartered in Connecticut, had the opportunity to meet in person for the check presentation. William and Liam flew up from Florida for the event.
NORD President and CEO Peter L. Saltonstall said, “It was an honor to meet William and Liam and we are grateful to the Cruz family and HomeServe for their support. Everyone at NORD has important work to do to provide a better and brighter future for Liam and other children with rare disorders. As a nonprofit, every donation makes a difference; we are thankful for the generosity and bigheartedness of HomeServe’s leadership and employees.”
If you are interested in making a gift to NORD or in honor of a loved one, please visit our Ways to Donate page or contact Ahleum Morris, amorris@rarediseases.org.