MLH Coordinator Portal

Awareness

CHD Awareness
Tried and True

MLH groups should do what they can to raise awareness about congenital heart defects and their impact. This is important because 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 February of each year, The Congenital Heart Information Network (www.tchin.org) sponsors CHD Awareness Week, February 7-14. MLH supports this and is actively involved. In addition to CHD Awareness Week, groups should try to plan activities and events that create awareness throughout the year. This Tried and True will provide ideas for creating CHD awareness in your area.

CHD Awareness Week (February 7-14)

Sponsored by The Congenital Heart Information Network www.tchin.org

It is not too early to start planning for this important week. MLH groups can participate in small ways or big ways, depending on the time you have to plan and implement activities, the number of people you have who can help you, and the amount of money your group has for CHD Awareness activities.

Some general tips for conducting any CHD activity or event during CHD Awareness Week (most can be used during the rest of year as well) are:

  1. Coordinate Efforts if Possible. When planning your publicity efforts, a good idea is to coordinate your efforts with other organizations. This can increase the visibility of your efforts and also provide you with additional help and resources. You can collaborate with others such as:
  • Your local Mended Hearts chapter if there is one in your vicinity.  Many chapters plan events for Heart Month in February.
  • Congenital Heart Information Network (tchin.org)
  • The local American Heart Association (americanheart.org) who support Heart Month during the month of February.
  • Hospitals are often our most valuable allies in the community and our partners in delivering the MLH program. The hospital’s communications, public relations or marketing staff can be extremely helpful resources in executing an awareness effort. If the hospital is already planning an event, MLH may be able to offer that all-important patient perspective or “voice” in their media efforts.
  • Other local groups that are CHD-related. There may be a United Blood Services, Children’s Heart Foundation (childrensheartfoundation.org), Adult Congenital Heart Association (www.achaheart.org), March of Dimes (www.marchofdimes.com), Ronald McDonald House (www.rmhc.org), etc. in your area. It would be helpful to partner with them, if possible, on awareness activities.

Coordination with other groups ideally helps to maximize visibility for the issue and leverages the strengths of the organizations. Remember, the goal should be to create awareness of the issues first and foremost rather than focusing on organizational positioning. Much can be gained by approaching efforts in a cooperative, coordinated and unified manner. To do otherwise dilutes the collective effectiveness, power and passion of all involved.

  1. Use Existing Materials and Localize/Customize. MLH has a wealth of materials already in existence for groups to customize and use in their areas. Refer to the coordinators’ section of the MLH website for CHD Awareness materials. If you don’t see something you would like, contact the National Program Director. If possible, we will try to create or locate these materials for you.

Please don’t use fill-in-the-blank news releases, proclamation request letters, letters to the editor, and other materials that need to be customize as is and send to newspaper, radio and TV outlets in the community. Items that need to be customized in these materials are either in bold and underlined or in red. If you have questions, be sure to ask the national office.

  1. Use Media Resources
  • Radio Stations—Many Mended Little Hearts groups have the opportunity to talk about CHD, their family’s story and/or MLH on a local radio station. Family stories are incredibly powerful in creating awareness. If you get a spot on the radio, be sure to review the MLH Fact Sheet and CHD Awareness materials (on coordinators’ site) before the interview. MLH has Public Service Announcements (PSA’s) (suggested radio scripts) on the coordinators’ section of the national website for MLH group leaders as well.   Be sure to provide contact information for your group during the interview so those listening can get in touch with you.
  • Newspapers—There are many ways to use local newspapers to create CHD awareness. Perhaps the easiest is posting about your awareness event in the health section of the paper. This is typically free, and you can put the information about your meetings in there each month.

Another way to use the paper is by writing a letter to the editor about CHD and your group. There are sample letters on the coordinators’ site. You will need to customize this letter, and it is often helpful to provide information about your child or your experience, as this will be more interesting to the reader.

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.

  • Television—Some television stations will want to do a story on a MLH family or on CHD, particularly during February. This is a wonderful opportunity to spread awareness about CHD and to let people in your community know about your group. The national office has materials and information to help you prepare, so don’t hesitate to contact them.
  • Newsletters—There may be other groups in your area related to health or youth that would put something about MLH in their newsletters free of charge, particularly during February because it is heart month. If there is a Mended Hearts in your area, they are very likely willing to put something in their newsletter.       Other non-profits, particularly dealing with parents and children, might be willing to put something in their newsletter about MLH as well.
  • Bulletin Boards—Some hospitals, doctors’ offices, local grocery stores, pharmacies, schools, libraries, etc. have bulletin boards where people can put information about CHD, local groups and events. Be sure to ask if you can put CHD Awareness and MLH information on these bulletin boards around town.
  • Web sites—Some organizations will put MLH information and a link to the MLH website (national or local) on their website. You may want to be sure your awareness activities are highlighted. Also, you can contact The Congenital Heart Information Network (www.tchin.org) and ask that your CHD events be included on their website.       Some hospitals will put MLH information on their website as well.
  1. Prepare for Events. Before any CHD Awareness event, be sure to have spokespersons identified in advance prepared to discuss the event and the issue(s) with any media present and with those who attend the event. You want to let people know about CHD and why this is important. Have these spokespersons review materials and CHD facts in advance.   Also, you want to be sure to have any handouts, visual aids, displays and materials prepared in advance of the event.
  2. Share Your Successes (including any pictures). We would love to hear what worked for you so that we can build on the success of others – that’s what our sharing network is all about. Whether your event is in February, or any time of the year – let us hear from you. One easy way to do that is through the Yahoo! network of MLH coordinators. If you haven’t yet connected to the network, then contact national Mended Little Hearts Program Director at lemacks@mendedlittlehearts.org.
  3. Purchase Awareness Merchandise. Before your event, you can order some items for CHD Awareness, like t-shirts, hoodies, bracelets, lollipops or other items to help make CHD more visible. We have some items on the MLH website under Market Place. If you want to order in bulk, you can find reduced prices for MLH coordinators only at http://mlh.leeannhunt.com/home/. Wearing a t-shirt or hoodie, alone, can be a good way to spread awareness. Often people will ask what MLH is, and this is a good time to educate them that CHD is the number one birth defect in the U.S. and a life-long chronic disease that affects millions.

CHD Awareness Week Activities

The following is a list of activities and ideas that our MLH groups have done for CHD Awareness Week (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—Putting information about CHD in social media, such as Facebook, Web sites, blogs, email signatures, online newsletters, and My Space, 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/bd/facts.htm) American Heart Association (www.heart.org/chd) and the March of Dimes (www.marchofdimes.com).

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 is 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. MLH 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 alert the media.

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 MLH. The national office has a nice, professional display you can use for events. They will ship it to you free of charge, but you will need to ship it back. Some groups make their own displays using pictures and stories of the children and adults in their group. You will want to include the MLH Fact Sheet at your booth, along with other materials that will help people learn about CHD and MLH. 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 MLH 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 more than facts. They might forget facts, but they will remember stories. Practice telling your story in a compelling way, without rambling. If you want to practice, use fellow MLH leaders as a resource. Val King, National Advocacy Chair, (advocacy@mendedlittlehearts.org) is particularly gifted at this. 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:

  • Local Hospitals—For example, the San Antonio, TX was able to put up a mural in their local hospital
  • Malls—For example, the Bowling Green group was able to paint a logo on a mall window
  • Stores—One group was allowed to put up a display at BabiesRUs. Other child-related stores might welcome displays
  • Schools
  • Fire Stations
  • Libraries

MLH Clothing, Accessories and Merchandise—People who wear MLH merchandise are often stopped by others and asked about the organization. This is the perfect opportunity to briefly educate them about CHD and MLH. Also, if you give away items with the MLH logo on it, people may contact our organization to learn more about CHD and what we 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 group members can work with to raise more awareness about CHD and to let them know about MLH. It is a good idea to give them brochures, Fact Sheet, and other information. We also have MLH leave behind materials for medical professionals. Some examples of people groups can work with awareness on are:

  • Hospital Child Life Specialist or Social Workers
  • Pediatricians
  • OB/GYN’s
  • Fire Fighters, Police and other Emergency Service Personnel
  • Schools
  • Camps
  • Nurses
  • Cardiologists

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 playground (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. Chik Fil’A is often wonderful at helping our 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. MLH members 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 for MLH groups. We do have a template for the hearts.

Awareness Activities for All Year Long

Care Packages—When you make care packages, include general information about CHD. There is a Family Information Pack on the Coordinators’ Web site that includes materials to use to help parents and families of children in the hospital.

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 lollipops or other candy with the MLH logo on it so people will be able to contact you. Dixie Varns of Sturgis, SD is a good person to ask about floats (SturgisSD@mendedlittlehearts.org).

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. MLH takes part in CHD Lobby Days to support the Congenital Heart Futures Act, and our members have taken part in AHA Lobby Days to increase research funding to the National Institutes of Health.

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 and email a copy to the National Program Director (Jodi.lemacks@mendedlittlehearts.org) for review. Also, include a MLH brochure and a Fact Sheet, if possible.

Volunteering—MLH members can volunteer for other organizations, like the Ronald McDonald House, Make-A-Wish, March of Dimes, etc. to help create awareness about CHD and MLH.

Materials and Information—Get CHD Awareness and MLH materials and information out everywhere possible. We have wonderful brochures, Fact Sheets and materials for groups.

Apply for Grants—When you apply for grants, you are letting organizations know about CHD and MLH.

Talk to Anyone Who Will Listen—MLH group leaders say to 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 MLH clothing and accessories.