Halloween has evolved into a significant holiday in many areas of our nation, including Southern California. Home decorations range from a pumpkin or two to lavish, and sometimes frightful, lighting displays. The Halloween season also marks the time of year when the annual Black and Orange Ball is held to raise funds for cystic fibrosis (CF), which damages the lungs and other organs of its victims.
The 5th Anniversary Black and Orange Ball will take place Saturday, October 19 at 6 p.m. at the Hyatt Regency Resort and Spa in Huntington Beach, California. The festivities include a cocktail reception, auction, dinner and a costume ball. The keynote speaker, Margarete Cassalina, will raise awareness by sharing her personal story of how her two children, Jena and Eric, inherited the disease. Jena died at age 13 from complications of the disease. The Cystic Fibrosis Foundation notes that she has become a leading advocate and has helped educate the public as well as raise millions of dollars for the foundation. Ms. Cassalina has been a volunteer with the Cystic Fibrosis Foundation for 22 years; she has spoken nationally about her experiences and family’s battle with the disease, which she chronicles in her memoir, “Beyond Breathing.” She donates 65% of the profits from her memoir to the Cystic Fibrosis Foundation.
The ball will be hosted by another family impacted by CF. At age one, the son of Southern California residents Jim and Tamara Christian was diagnosed with CF. Michael Shumard, executive director, Cystic Fibrosis Foundation, Southern California chapter, explains, “More than 30,000 children and adults in the United States suffer from cystic fibrosis, and we are honored to host an annual Halloween ball that funds medical research allowing them to live longer, healthier lives… “The Cystic Fibrosis Foundation has driven and supported all major medical advances to provide the means to cure and control the disease. Because of funds raised at these events, progress continues by bringing lifesaving drugs such as Kalydeco and this year’s FDA approval of the TOBI Podhaler inhaler device to market.”
The Harvard Business School recognizes the Cystic Fibrosis Foundation’s business model as one of the most effective charity models in the nation; 91 cents of every dollar it receives is invested in CF research. The foundation is responsible for promoting new, promising drugs for CF through The Food and Drug Administration (FDA) pipeline for approval. Since its first event in 2009, the annual Black and Orange Ball has raised $315,000. For further information regarding the event, click on this link.
CF is an inherited disease characterized by an abnormality in the glands that produce sweat and mucus. Due to improved treatments, people with CF, on average, live into their mid to late 30s. Due to improved treatment, many CF victims are now living much longer. The disease affects various organ systems in children and young adults, including the following:
- Respiratory system
- Digestive system
- Reproductive system
Approximately 30,000 individuals in the United States are affected with cystic fibrosis. It occurs mainly in Caucasians of northern European ancestry; however, African-Americans, Asian Americans, and Native Americans may have the disease as well. Approximately one in 31 people in the nation are carriers of the cystic fibrosis gene. These people are not affected by the disease and usually do not know that they are carriers. If both parents are carriers, their children have a 25% risk of having CF (two recessive genes), they have a 50% chance of being a carrier (one recessive gene). And a 25% chance of not being affected.