The Group B Strep Association (GBSA)
GBSA Grants and Gifts
Dear Friends,What a long time these seven years have been for me. The Group B Strep Association has been my labor of love. My husband, Jay, and I have been truly humbled by what all of us have been able to accomplish. For us it has been a process of life to death to life again. We held our week old baby, Keegan, for the first time as he lay dying in our arms. What has come from that is this organization, this family of families, this army of armies. We have won. We have won. We have won!
Because of our children, our love and our labors, other babies will never experience a Group B Strep infection. Jay and I want to thank all of you who have helped over the years, through generous donations, volunteer efforts, and through sharing. We know that nothing in our lives will ever compare to this outpouring of love from so many. This has all been for our children - for all children. We are honored to have been a part of it.
It is with sadness and happiness that I write this very last GBSA newsletter. We have accomplished part one of our goals. There are now national standards in place to protect babies. The Centers for Disease Control, and the American College of Obstretricians and Gynecologists published concurrent guidelines in May of 1996 for GBS prevention. The American Academy of Pediatrics should publish their concurrent statement in early 1997. If the standards are not adhered to, then legal actions will be most sure to follow. GBSA members have worked for this since our formation in 1990.
I have worked thousands of hours over these seven years, along with many of you, to see that standards were developed. It is time for the organization to focus on implementation of the guidelines and further support of the vaccine development. Because of this, our efforts at public advocacy will focus less on direct phone contact with the public and more on education through our new GBSA Homepage materials. The new GBSA website is up and running at http://www.groupbstrep.org. I would like to thank Chris Ogden, InfoMatters' President, for his donated time and expertise in providing GBSA with an incredible website. In the summer of 1996, GBSA published a new patient education pamphlet that reflects the new standards. This educational pamphlet along with many other resources, including a chat group are now available through the homepage.
I hope that you will continue to support the Association activities by keeping up to date on changes and by educating in your own communities. I encourage all of you to share the new educational pamphlet with your communities (these were mailed to members this summer). Continue to do the wonderful education work you have been doing. Continue to be an advocate for our children. Continue to share your love unselfishly.
The Group B Strep Association could not exist without the generous and heartfelt support from people like you. If you have found our information useful, please make a donation. Our expenses will change over the next year as the printing, mailing, and phone costs reduce somewhat. However, we will now incur costs associated with homepage maintenance, phone line, and computer support. Our mail-list will be kept in case the vaccine efforts require public support letters, so please keep us current on your address changes. Your donation will allow us to help: support the vaccine efforts so that it will be a reality in the near future, expand and maintain our website, help others network, and promote awareness of GBS. In short, your donations help to save lives!
The Group B Strep Association is extremely frugal in how we handle our expenses. Please know that your donation will be used wisely and under sound leadership. We have worked very hard as an organization of parents, families, and dedicate volunteers to bring you this information. Our babies were victims of this infection. We have worked for national prevention standards. We have worked for government funding to support vaccine efforts. We have worked so that other families will not endure the pain of this horrible infection. We have worked so that babies will no longer have to suffer from Group B Strep infections.
The Group B Strep Association will remain intact as a nonprofit organization until the vaccine is ready for public use. I anticipate this will be 3-5 years. I plan to continue my involvement as President by updating the website as needed, for instance, if changes to the standards are developed, or there is new news regarding the vaccine - this will be posted to the homepage information. As I mentioned earlier, my plan is to focus on the implementation of the standards and promotion of the vaccine. GBSA will also continue to support individuals without computer access via our traditional phone/mail information.Once the vaccine is on the market and in use, I would like to use any remaining funding for a scholarship fund for a medical resident to pursue an infectious disease felloship, ideally under the guidance of one or more of our medical advisors.
I have slowly come to terms with life and what we are handed. I am still coming to terms with accepting the loss of my baby boy, the loss of what might have been, what should have been. Maybe before I grow too old I will come to understand. Jay and I have learned to cherish what we have. We do cherish the Group B Strep Association and all the friends and families who have touched our lives. We grieve for the very very great loss that Group B Strep has wrought on the thousands of lives lost and the thousands of lives left. It cannot be undone. It is a permanent loss, it is forever. But our love has made a real difference, every little effort has made a difference, from the grandpa who shared pamphlets in his barber shop to Leslie Gazeley, mother from California who had legislation passed and set the catalyst for the new prevention guidelines. Every effort has added up and made a difference.
I will miss all of you. It is time to change, so we will. The Association accepts its fate, which by the way, was never to become a big administratively laden, top heavy, expense wasting, mass mail campaigning non-profit, but a do-what-it-takes-with-what-little-you�ve-got and get the job done non-profit and put yourself out of business by reaching your goals (once the vaccine is available).
I too must accept my fate. I must allow myself to feel pride and accomplishment for these seven years of struggle. For those who know me, this will be very hard. I am proud to have been a part of this and glad to have found my passion. I have also seen how much work there is to be done for our children. The next chapter of my life leads me back to school. In the fall of 1997 I will begin course work toward medical school. My children have taught me well.
Much love to all of you and many thanks!
With warm regards,
Gina Burns, President
