Raising awareness is important because not only are most people unaware of CHD, the more awareness we raise, the more likely it is that people will give money to CHD research, which could improve the lives of our children and adults living with CHD. In addition, you never know when raising awareness could save a life. Here is some helpful information about how you can raise awareness in your community:
Finally, many papers, particularly smaller papers, will do public interest stories about people in their area. CHD families have very compelling stories, and newspaper editors are often willing to print them before a big group event like a CHD Awareness event or a major fundraising event. Be sure to give contact information for your group in the article.
The following is a list of activities and ideas that Mended Little Hearts groups have done for CHD Awareness Week that any group could do (and can be done all throughout the year):
Getting Stories in the Media – One of the best ways to spread awareness is to get stories about CHD kids and adults in the media (as suggested above). This helps others learn about CHD. Also, some families dealing with CHD will be able to find your group and get the support they need.
Social Media – Posting information about CHD in social media, such as Facebook, Web sites, blogs, email signatures, and online newsletters can be very helpful in spreading awareness. Be sure that the information you are posting is accurate. The best sources of information are the Centers for Disease Control (http://www.cdc.gov/ncbddd/heartdefects/facts.html) and the American Heart Association (www.heart.org/chd).
Proclamations – Each year, many groups ask their governor, mayor or local official to sign a proclamation, which is an official statement about a particular matter, declaring that February 7-14 as Congenital Heart Defect Awareness Week. Often the best way to contact your government official is through the official website. On that site, there is often an address to mail requests to and/or an email address. The Congenital Heart Information Network (www.tchin.org) has samples of proclamations and letters asking for proclamations for you to customize. Groups are usually provided with a copy of the proclamation after it is signed. In some instances, groups may be able to get a photo op (request FAR in advance) with the government official signing the proclamation. If this is the case, be sure to invite as many people from your state or town as possible to the event and send media advisories.
Booths or Tables at Events – There are many events that groups can participate in by having a booth or a table. At these events, you want to have information and materials available about CHD and your organization. Some CHD groups make their own displays using pictures and stories of the children and adults in their group. You will want to include Fact Sheets at your booth, along with other materials that will help people learn about CHD and your organization. Some events groups participate in are: Health Fairs Carnivals/Fairs Heart Walks Sporting Events Heart Camps Other local events.
Speaking Engagements – Group members, and even some of the older CHD children and young adults, should speak about CHD and wherever possible, i.e., to Rotary or Kiwanis groups, local service organizations, schools, police and firefighters, local businesses, and at other events where there will be speakers. Be sure to customize your speech for the audience and occasion. Also remember that people want to hear stories (not too much detail) more than facts. They might forget facts, but they will remember stories. Practice telling your story in a compelling way, without rambling. Learn what your time constraints are ahead of time, and be sure to stay within them. Also, always bring materials with contact information and CHD information with you. Speaking can also help with fundraising for your group.
Murals, Logos, Displays, Bulletin Boards – Many groups have the opportunity to put displays, murals, bulletin boards or logos out around their local community. Some examples of locations for these items are:
CHD Clothing, Accessories and Merchandise – People who wear CHD merchandise are often stopped by others and asked about CHD and their organization. This is the perfect opportunity to briefly educate them about CHD. Also, if you give away items with the CHD organization logo on it, people may contact your organization to learn more about CHD and what you do.
School Activities – Some groups have members go into the schools to talk about hearts and heart defects in an age-appropriate way. For younger children, members may want to take in crafts or pictures to color. Be sure to get approval for any activities with the school principal or administrator.
Jump Rope for Hearts – The American Heart Association plans many Jump Rope for Hearts activities throughout the nation. Sometimes, the purpose of this event is to raise money and awareness for childhood obesity. There are, however, some Jump Rope for Hearts events that raise money for CHD research and raise awareness about CHD’s. You will want to explore this if there is an event in your area and determine what is best for your group in terms of time and resources.
Working with Others – There are many people groups can work with to raise more awareness about CHD and to let them know about their organization. It is a good idea to give them brochures, Fact Sheet, and other information. Some examples of people groups can work with awareness on are:
Parties and Events – Groups can have parties or CHD Awareness events to help raise awareness. Groups, if possible, should celebrate CHD Awareness Week in some way. Some examples are Valentine’s parties, bowling parties, parties at a Children’s Museum, parties at an Inflation Nation or other inflatable playgrounds (find out age limits though to be sure not to exclude older CHD kids), and parties at local restaurants. Be sure to have an opportunity for people to meet each other (introduction time) at your event. You may be able to get much of your event and the food for your event donated. Chick-fil-a is often wonderful at helping non-profit groups. If you can get media coverage for your event, that will increase awareness.
Valentine’s Cards and Items – Everyone likes to get a Valentine card or item. CHD families and friends can make and distribute Valentines. Children in the hospital, especially, LOVE to receive them.
Selling Paper Hearts – This is a fundraiser, but also creates awareness if you put a CHD fact or statistic on the hearts. Local businesses and restaurants will often sell the hearts. You can create your own template.
Taking Helpful Items to Families Who Have Children in the Hospital – This often not only helps families, but creates awareness. Be sure to check with the hospital to verify what items would be acceptable.
Parades – If you have an opportunity to have a float in a parade, this can be a good way to spread awareness. Be sure to have website or contact information somewhere on your float. If your group has funds, you could throw awareness items with your organization’s logo on it so people will be able to contact you.
Lobbying – If you get a chance to lobby locally or nationally, you are making government officials aware of issues that people with congenital heart defects and their families face. Mended Little Hearts co-hosts CHD Lobby Days to support the Congenital Heart Futures Act to improve data surveillance and to increase research funding to the National Institutes of Health. Most years, anyone can come lobby.
Targeted Mailings – Your group could create a targeted mailing to those they wish to educate about CHD. Be sure to check spelling and accuracy of all information. Include a Fact Sheet and other important information, if possible.
Volunteering – CHD family members can volunteer for other organizations, like the Ronald McDonald House, Make-A-Wish, March of Dimes, etc. to help create awareness about CHD.
Materials and Information – Get CHD Awareness materials and information out everywhere possible.
Talk to Anyone Who Will Listen – Talk about CHD to anyone who will listen. This can be at the grocery store, in line for a movie, or anywhere. This conversation can often be started by wearing CHD clothing and accessories.
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