Allergy-Aware Communities

YOU can make a difference!

by Cindy Paskey, St. Catharines, ON

b! aware    b! informed    b! safe

By now, it should be clear to everyone that the prevalence of allergic conditions, including asthma and anaphylaxis has increased over the past decade. We know that milk and egg are the most common food allergies in young children, followed by peanut and nut allergies. While some studies estimate 20% of children will outgrow peanut/nut allergies, it remains a lifelong condition for the remaining 80%. Milk and egg allergies can also be lifelong.

When you are living with life threatening allergies, staying safe is an everyday priority. Though it’s hard to imagine a silver lining, we have the opportunity to join together and to gain strength in our numbers. Through our collective voices, we can pave the way, making the world safer for current and future children, teens and young adults at risk of anaphylaxis. How? A good place to start is by forming or joining a ‘support group’ in your own community.

“Our best learning comes from each other.” Support groups provide a vehicle for families to share information and to create positive changes in their communities.

I speak from experience. For 10 years, I have belonged to NASK – Niagara Anaphylaxis Support and Knowledge, as well as to AAIA and Anaphylaxis Canada. Individually, and together, these groups and many others have put anaphylaxis awareness in Canada ‘on the map’, so to speak. Working separately, this might be impossible. Working together, we’ve been successful at lobbying for positive changes in Canada. Sabrina’s Law exists in Ontario, and strong efforts are underway for similar legislation in Alberta and British Columbia. In Quebec, the AQAA recently launched the Certified Allergen Control program – www.certification-allergies.com. Together, much can be accomplished!

Whether you already belong to a group, or you are thinking to establish one in your community, here are some ideas:

• Develop a flyer that gives information about your group: who it is, what it does, when it meets.
• Identify your group’s vision, and how it will be achieved. Knowing this will help you decide on priorities and stay focused.
• Identify the benefits to becoming a member of your group. These might include:
  • An orientation package
  • Email updates
  • Newsletters
  • Member’s borrowing library
  • Meetings
  • Family fun events
  • “Buddies”
• Involve others. Key roles are:
  • Group Leader – many groups share this role among two or three people
  • New member orientation
  • Planning meetings and events
  • On-going communication with the membership – web site, email, newsletter
  • Treasurer
  • Promotions and community partnerships
  • Webmaster
• Advertise with:
  • Local allergists and interested physicians
  • Other health care providers
  • Health food stores
  • Community Centers
  • Sports, recreation and activity groups
  • Libraries
  • Schools
  • Day Cares
• Use print and radio advertising that is free, such as:
  • Small local newspapers
  • Community TV programming
  • Radio
  • Web sites
• Fundraise:
  • Charge a membership fee.
  • Approach community groups that do not require a Registered Charity Number. These might include Lions, Kiwanis, Rotary  and Church groups.
  • Hold fundraising events, such as garage sales.
• Acquiring registered charity status involves an application process to Canada Customs and Revenue Agency. Eligibility requires an elected Board of Directors, bylaws, annual financial reports that are audited, minutes of meetings, an annual general meeting and elections. This can be cumbersome for a new group. At NASK, we have decided to focus our energy on day-to-day activities in our communities, rather than maintaining the infrastructure required for Registered Charity status.
• Invest in a display board. There is a wealth of professional, credible information that can be used to create an awesome information display. The display can be used wherever you go. It draws attention and lends a professional credibility to the work that you do in your community.
• Connect with your local Public Health Department. Since we are the families living with allergies, we often have access to the day-to-day information that is most helpful. Share this information with Public Health Nurses. They will help to communicate important information to others.
• Participating in community events provides a good way to raise allergy awareness:
  • Health and Wellness fairs
  • School Events
  • School Board Events

  Events like these are where your information display board is most helpful.

• Develop partnerships with other nonprofit groups. Who are your allies? Who will help you communicate your message so that allergy awareness increases? Groups might involve any of those listed above, as well as fire fighters, emergency responders.
• Develop a web site. This requires commitment from someone who is willing to keep information up to date.
• Once your group is established and has gained credibility, maintain contact with allergists, public health and other health care providers. Ask them to refer new members to your group.

Here are some ‘lessons learned’:

• Structure for meetings helps – There should be a topic for meetings, a simple agenda, and time frames should be adhered to.
• Find local experts to speak to your group – allergists, paramedics.
• Other meeting ideas are ‘mix and mingle’ where adults can meet each other and share information. Family events give children the opportunity to meet others who also live with food restrictions and carry auto-injectors. Themes can include skating, swimming, bowling, rock climbing, organized games at a park, special event parties that are non-food in focus... anything kids enjoy!
• A ‘buddy system’ is very helpful for new members. Connect new families with more experienced families, on the basis of allergens, where they live, schools their children attend.
• Email works! It is a quick and easy method of keeping members up to date. I’ve found it is well received.
• Remember those families without email. A ‘call tree’ to inform of upcoming meetings and events is helpful. So, too, a newsletter.
• Encourage members to share helpful information with each other, to be distributed by email and included in newsletters.
• Many people are willing to help, if you ask them directly and identify what you would like them to do (keeping in mind their natural abilities, preferences and available time).
• It can take a long time to establish credibility and only a short time to lose it. Credibility is earned and maintained by relying on information and facts provided by professional groups like AAIA and Anaphylaxis Canada.
• Media interviews require preparation. Know your facts. Decide on your ‘sound bites’ – need to know information - ahead of time. For example, ‘with food allergies, every bite counts.’ Take your time when responding to questions and focus on your key message. Print and TV reporters look for the human impact behind the story and usually want to profile a family. Radio interviews often focus on information rather than personal anecdotes.
• Letters to the Editor allow you to craft your message, though there is no guarantee they will be printed. These are especially helpful when responding to a local news story and can be a good tool for providing accurate information.
• Membership involvement in your group might vary, over time. Some people get their introductory package of information and are never seen again. Others get involved. Go with the flow, and recognize that things will evolve over time, depending on who is involved.
• When there is a lull, stay focused on your group’s vision. You might need to be patient with others, and with yourself!

Support groups are a way to make a positive difference for everyone living with allergies. Every journey begins with a first step. Sabrina’s Law in Ontario demonstrates the power of working together. Quoting Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

from Allergy & Asthma News, Issue 2 2006