BBM CMV Foundation - Brendan B. McGinnis Congenital CMV

advertisement
BBM CMV Foundation:
Leading the Way in CMV Awareness & Support
Public Awareness · Vaccine Research Support
Working Together to Eradicate Congenital CMV
Who We Are
 Established in 2007, we were the first non-profit
established worldwide dedicated to raising awareness of
congenital CMV.
 We are the only non-profit worldwide dedicated to
financially supporting CMV vaccine research.
 Our mission statement is to raise awareness of CMV, to
financially support CMV vaccine research, and to affect
change in the medical community so physicians begin to
counsel woman about CMV prior to or during pregnancy.
Board of Directors
 Founder/President: Tracy McGinnis, whose 8 year old son,
Brendan, is severely disabled and medically fragile due to
CMV.
Currently on our Board of Directors:




Dr. Mark Schleiss, University of Minnesota
Dr. Mike Cannon, CDC/NCBDDD
Dr. Michael McVoy, Virginia Commonwealth Univ.
Dr. Felicia Goodrum, University of Arizona
What We Do
We currently have 3 primary areas we focus our efforts.
The culmination of these works have reached worldwide as
we continue to provide a diverse array of support to the CMV
community, both professionally within the research arena
and personally within the network of CMV-affected
families across the globe.
 CMV Vaccine Research Support
 CMV Awareness
 CMV Family Support
CMV Awareness
We have a number of CMV Awareness campaigns
reaching not only nationally, but internationally.
 Since 2008, our Foundation has been holding CMV Awareness Walk-n-Rollathons
across the country. Raising much needed awareness as well as vital donations to
support our goals, these important events are hosted by CMV-affected families
each Spring. This year we will hold our 5th annual nationwide events.
 To date, we have distributed over 26,000 of our tri-fold CMV informational
pamphlets worldwide to the general public as well as to hospitals, physician
offices, daycare centers, fitness centers, hair salons, schools, and other such
centers of business. We offer these as a free public service as part of our CMV
Awareness mission.
CMV Awareness
 PSAs: This year we produced 3 PSAs which have been distributed to all major
television networks and many cable networks. PSAs range from 15-60 seconds
in length and represent an extremely effective outreach intervention,
capable of targeting a broad audience.
PSA figures to date are:
Total airings: 3,035
Total stations airing: 26
Total audience impressions: 1,038,385 Million viewers!
 Facebook is an important medium for our Foundation regarding CMV
awareness and provides supportive outreach for CMV-affected families
around the world. Since 2009, our CMV awareness ad on Facebook has had
nearly 3 million impressions, underscoring the effectiveness of social
networking in increasing knowledge about congenital CMV!
 You Tube: We have created a number of CMV Awareness videos, reaching over
17,000 viewers. These can be viewed on our You Tube Channel: CMV Foundation
CMV Awareness
in the White House
CMV Awareness
in the White House
CMV Family Support
Our Foundation has developed a support network for
CMV-affected families around the world, as well as an
annual conference gathering for CMV Families
 Making Tracks Together: 2013 will be the 4th annual gathering for families
with children affected by CMV. This 4 day event includes expert guest
speakers and parent speakers, as well as formal and informal gathering
times.
 Family Outreach Committee: This committee is dedicated to lending timely
and vital support to families affected by CMV by providing information,
referrals and at times a simple shoulder to cry upon.
 Facebook: With over 500 CMV-affected families worldwide on a private
group page, we lend daily support at any hour of the day or night.
CMV Vaccine Research Support
 We recognize that there is only one way to eradicate
CMV…a vaccine.
 With thousands…tens of thousands…of families
being affected worldwide annually by CMV, we must
continue to facilitate an exponential increase of
funding for CMV vaccine research!
 With combined efforts and energies, we can work
together with NIH, CDC, FDA and other agencies to
help see that change occur.
CMV Vaccine Research Support
Award for Innovation in CMV Vaccine Research
We are pleased to lead the way in the non-profit, grassroots effort to
eradicate CMV with vaccine research support by presenting an annual award
to innovative researchers in the CMV vaccine field.
We are honored to be presenting our 2nd annual award this Fall at the
4th International Congenital CMV Conference in San Francisco.
www.cmvfoundation.org
We encourage all conference attendees to contact us
so we may work together on these efforts, and we
look forward to positive forward movement as we
strive to develop a CMV vaccine and ultimately
eradicate CMV.
Email: mcginnis@cmvfoundation.org
Brendan B. McGinnis
Congenital CMV Foundation
www.cmvfoundation.org
Download