Remembering Ruthie With Epi Everywhere
In memory of Jon Terry’s sister Ruthie, we are launching our first major fundraising campaign in order to help protect those with life-threatening allergies. We’ve already seen results in saving a life thanks to a donation of epi-pens we made to the local Boy Scouts Association last summer. Will you help us continue our important work?
Remembering Ruthie With Epi Everywhere
By Jon Terry & Suzanne Driscoll
October 14th, 2016
As many of you probably know, my sister Ruthie Cornell died of anaphylaxis as a result of a bee sting seven years ago. Ruthie was a life-long, avid gardener, but she didn’t know she was allergic to bee stings. Had epinephrine been on hand via an epi-auto-injector (EAI), she would still be alive. Ruthie would have been 60 years old on May 18 of this year and I miss her every day.
In her honor and to help save others from dying from undiagnosed allergies, I started the Allergy Advocacy Association where we have advocated for epinephrine to be available everywhere. We accomplish this with legislative activities, programs to educate the public about EAIs (using them and keeping them on hand), and providing EAIs to organizations in need. Today I would like to ask your assistance in furthering our goals in these important initiatives.
I’m pleased to report we’ve had some major success thus far.
Boy Scouts - In the summer of 2016, Kevin Hill, a volunteer for the Seneca Waters Boy Scout camp, was saved by an epi-pen the Boy Scouts had on hand after being stung by a hornet. The epi-pen was funded by the Allergy Advocacy Association. As with Ruthie, Kevin didn’t know he was allergic to hornet stings. Kevin’s life was likely saved because counselors were on hand, knew what to do and had the epi-pen at the nurse’s office.
Legislation - Part of making EAIs available everywhere they might be needed is supporting legislation in New York State. Here is the list of legislation we’ve been successfully involved with:
- Emergency Allergy Treatment Act authorizes entities such as sports stadiums, food courts, camps, etc. to stock EAIs for use of their customers who might need it while they are on-site. This was signed by Governor Cuomo on October 7, 2016.
- Student Self Carry authorizes students to carry their own EAIs with them as they go about the school day on campus, rather than store them with the school nurse.
- Nurse Authorized Stock Epi authorizes school nurses to maintain a stock of EAIs to administer to those who don’t know they have allergies.
Outreach - Since our inception in 2011, we’ve educated the public about EAIs, allergies and anaphylaxis in many ways:
- Over 200 live events in Western New York, speaking with about 4,000 people. The two types of events we focus on include partnering with Allergy Community Experts to give informational and training presentations to the community and at health fairs, where we provide information and rally support for legislation and research.
- A monthly newsletter is sent to over 800 people where we share how families around the country manage their allergies and report trends of importance to the allergy community.
Without EAI’s on hand, children can die from undiagnosed allergies while at Scout camp, day care, or at school. In response to the many inquiries received from directors of the Boy and Girl Scout Associations and day care centers in Western New York State for donations of EAIs for emergency use, we’ve initiated the Remembering Ruthie With Epi Everywhere grant awards program.
You have likely been hearing about the huge price increase of epi-pens, which now cost about $600 per epi-pen pack (2 pens per pack). They were $100 per pack only a few years ago. As there are no insurance programs available to these groups to reduce the cost of EAIs, neither the Boy Scouts, the Girl Scouts, or our day care centers can afford this price increase. This puts the children in their care at risk. Your support of Remembering Ruthie With Epi Everywhere will allow us to expand our ability to provide desperately needed funding to these groups so they can purchase EAIs to keep on hand for those children with undiagnosed allergies or who don’t have their EAIs with them. This could save the life of someone you know and love.
To protect everyone from a known (or worse, unknown) life threatening allergy while away from home, please click below to donate what you can to this important program. No donation is too small, and all donations are fully deductible to the extent of the law.
Of course, if you prefer, you can always send a check to:
Allergy Advocacy Association
97 Bev Circle
Brockport, NY 14420-1236
Our association is very grateful for any support you may choose to give us. The vision of the Allergy Advocacy Association is a clear and direct one:
Not another life lost to anaphylaxis—not another life lost to ANY life-threatening allergy!