Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has.

Transcription

1 Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has. Margaret Mead 1

2 Executive Summary Osteogenesis Imperfecta (OI) is an orphan disease. The CBBF is by far and away the largest source of fundraising in the OI community. The CBBF is a 100% volunteer organization. Your donation will make a huge and immediate difference in people s lives. 2

3 Our Mission The mission of the Children s Brittle Bone Foundation is to provide funds for research into the causes, diagnosis, treatment, prevention, and eventual cure for Osteogenesis Imperfecta (OI), while supporting programs that improve the quality of life for people afflicted with OI, promote awareness, and educate the public. 3

4 Osteogenesis Imperfecta (OI) A genetic bone disorder characterized by fragile bones that break easily. A person is born with this disorder and is affected throughout his or her life time. Frequently misdiagnosed, the number of Americans affected with OI is thought to be up to 50,000. In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, Dentinogenesis Imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people. 4

5 Osteogenesis Imperfecta (OI) Treatments focus on minimizing fractures, maximizing mobility, maximizing independent function and general health Medications Bisphosphonates such as Aredia, Fosamax, Reclast, or Forteo Prognosis Before the age of ten many with OI will have broken 100+ bones Life expectancy may be shortened for those with more severe symptoms. The most severe forms result in death at birth or during infancy. Respiratory failure is the most frequent cause of death for people with OI, followed by accidental trauma. 5

6 Our History Founded in 1987 by a group of Chicago based friends that came together when one family s daughter was born with OI. At the time, very little was known about the disease and almost no research was looking into causes, diagnosis, treatment, prevention, or eventual cure. Through a series of increasingly large fundraising events, a 100% volunteer board has raised over $6MM to date and was instrumental in getting the NIH to provide another $12.5MM research stipend. Our focus over the last 7 years has been directed towards two amazing programs with incredible results The Linked Clinical Research Center Impact Grants 6

7 Linked Clinical Research Center A nationwide network designed to provide the highest-quality of standardized medical care for people living with OI. All of the LCRC sites have a multidisciplinary group of specialists with extensive experience caring for children who have OI. Advance standards of care and improve treatment through clinical research. By sharing data, the Centers will be capable of tracking how OI changes across a lifetime, what complications are common, and which treatments are beneficial. A joint initiative between CBBF and its sister organization the OIF For more on the LCRC click here 7

8 Impact Grants Direct assistance is given to families and individuals living with OI and under extreme financial difficulties. Wheelchair accessible vans, hearing aids, physical therapy, emergency dental surgery, specialized medical equipment, etc. Funded in three ways: Annual cycle Hero Grants Emergency Applications A Joint CBBF + OIF Initiative Watch this Thank You video from an Impact Recipient 8

9 CBBF Golf Classic #1 Source of fundraising Typically net s $100k - $150k 22 years running the most fun, exciting, high-end golf outing on the North Shore. 1 st class reputation Amazing Live Auction Incredible Food Experience 9

10 Opportunities To Help To scale up our successful programs and accomplish our goals, we need your help. While we are proud of the work that has been done, we are humbled by how much is left to do. We fund less than 20% of the Impact Grant requests that are submitted each year. Expand our donor base beyond our incredibly generous friends in the Chicago area. Corporate sponsors 10

11 Your Donations at Work Here s how we ve spent your donaxons over the last 3 years: Impact Grants LCRC Golf Outing Expenses Admin & Overhead 0% As a 100% volunteer organizaxon our administraxon cost is zero! 11

12 Why CBBF There are many worthy causes to donate to, here s how we re different: Our successful programs are making a BIG difference in the lives of those living with, studying and treating OI. Your donations WILL make an immediate difference in people s lives OI is an orphaned disease If we don t do something, nobody else will (or can) To donate online today click here 12