Last Friday marked the start of national Cystic Fibrosis Awareness Month, when thousands of volunteers across the country will fundraise and advocate for more research to fight the disease. The month-long initiative will be spearheaded by the Cystic Fibrosis Foundation (CFF), which will organize a series of events nationwide.
The CFF plans to focus on several awareness events and campaigns with the main purpose of encouraging patients and other community members to share their stories of hope and progress about living with CF, and to help others who struggle with the disease. Therefore, the CFF is inviting everyone to get involved and help educate and empower others about Cystic Fibrosis.
In order to support the CF community, the CFF is making a “CF Awareness Toolkit” available to the public, which includes a series of tips, tools and language materials to help volunteers spread information about the disease. In addition, the foundation encourages its advocates to contact members of Congress to raise CF awareness, to participate in the CFF’s Great Strides event, and share information through social media.
While there are currently about 30,000 people in the country diagnosed with the disease, over 10 million are symptomless carriers of the defective CF gene. CF was originally considered a childhood disease, with most patients not living past elementary school. However, thanks to advancements in CF research and care, the life expectancy for people living with the disease has doubled, and patients are now living into their 30s and 40s.
The CFF has worked for years to support not only awareness, but also the search for a cure for CF through grants for promising research projects. Most recently, the foundation granted a $5 million development award to clinical stage drug developer Corbus Pharmaceuticals Holdings to be used in the first-in-patient phase 2 clinical trial of the oral anti-inflammatory drug Resunab.
Similarly, CFF also recently awarded $14 million in additional funding to expand a research partnership with Genzyme, funding which will be invested in the company’s R&D programs and support studies to identify new compounds able to repair the defective CFTR protein present in patients with the most common mutation of CF, F508del. Both of the grants were awarded through the non-profit drug discovery and development affiliate of CFF, Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT).