Spotlight: Meningococcal Vaccine Advocacy Groups

Meningococcal disease leaves behind physical and emotional wounds in its victims, their families and friends. Meningitis Angels and the National Meningitis Association are two nonprofit organizations made up of survivors and families of victims. Both groups support victims and their families and advocate for awareness and prevention of the disease:

Meningitis Angels — Founded by Frankie Milley after the death of her only child, Ryan, at age 18. Meningitis Angels helps support meningitis victims and their families. The organization:

• Creates public service announcements, including songs and music videos, that feature victims and their families
• Lobbies state governments to increase meningococcal vaccine requirements
• Produces educational materials
• Offers a network to support survivors and their families, and more

National Meningitis Association — Founded by a group of parents whose families were affected by meningococcal disease, the National Meningitis Association (NMA) has grown into a national organization that works to protect families from the dangers of meningococcal disease through education and raising awareness of vaccine-preventable diseases. NMA:

• Creates public service announcements
• Answers common meningococcal disease questions
• Shares personal stories of victims and survivors
• Lobbies state governments to increase meningococcal vaccine requirements, and more

Organizations like these are important because they provide a perspective that scientists, researchers and doctors cannot — one that can only come from the painful firsthand experience of coming face to face with meningitis. Although their stories are often difficult to share — and for us to hear — they are important because they remind us how severe this disease can be, and they force us to continue on the path toward discovery and policy making that will protect more families from having this story.