Participating in Research
Volunteering for participation in research studies is a generous act that creates the potential of obtaining new insights on the conditions we are researching. This may eventually lead to improved diagnostic tests and therapies for these disorders. For more information about participating in research, click here.
Giving to Support Research
Many people ask what they can do to hasten our work to determine a cause or find a cure. One important action you can take today is to make a gift to the Program in Genomics to support our research. Every gift, no matter the size, plays a vital role in bringing us one step closer to an answer. When you make a gift, you will receive a gift acknowledgement for tax purposes. Your gift is tax deductable to the extent provided by law.
To make your gift online, please click here >>
For more information about giving, please contact:
Children's Hospital Trust
1 Autumn Street, #731
Boston, MA 02215-5301
You can also help by raising public and legislative awareness of the different genomic conditions we are researching. The more that people learn about this group of conditions, the greater the possibility that sufficient funds will be raised for research and for assistance to individuals with a particular condition. We know of many individuals and diagnosis-specific groups who have made a difference by building awareness of the condition in their family. Here are some of the successful approaches:
Write a letter to your community newspaper. In the letter, ask the Editor to help you reach the community by educating the public, including health professionals, on the condition in your family. If possible, draw from your personal experience to emphasize why it is important to promote awareness, education, and research. It is also a good idea to highlight previous efforts in the cause as well as current projects and future activities, such as seminars, the Web site, fundraisers, etc.
Reach your Representatives in Congress and ask your friends and families to do the same. Some families have told us they get discouraged about letting their Congressmen know their concerns. They feel their condition is too rare and lawmakers may be too busy to listen. The truth is that , as a living testimony of the issues surrounding genetic/genomic conditions, you are more likely to be heard. You can reach your Congress Representatives in many ways. You can make an appointment for a visit and write a letter or an e-mail. The Genetic Alliance provides key telephone numbers, names of government agencies, as well as tips on how to make a successful visit and on how to write an effective letter.
Participate at conferences, seminars, and health fairs. If you enjoy speaking to people and are gifted in the area of oral presentations, you can volunteer to speak at an appropriate event. This can be a good opportunity to educate the public about a given condition and share your experiences. Another great idea is to attend these events and provide free information brochures to others. Several Web sites, such as the National Organization for Rare Disorders (NORD), the Genetic Alliance, the MDA, and others post information on future events. Remember that to become a speaker or provide brochures you must contact the event coordinators and ask permission first.
Think of ways you can help raise awareness! Speak to your relatives, friends, and community members. You can also contact us if you want to share your ideas with us. Together, we can make it happen!