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.
Making a Donation
Often, people contact us saying they would be interested in making a monetary contribution to our research, hoping that one day we will be able to determine causes and a cure for a particular condition. If you are interested in making a donation to our laboratory, we and many other children and adults around the world would be very thankful. Donations directly support our studies. In addition, you may be able to target your contribution to your specific interest.
Donations to the Kunkel Laboratory can be made online (please select "Other" from the "Designation" drop-down menu, then indicate "Kunkel Lab"), or by making a check payable to Boston Children's Hospital. If you write a check, please include a note stating that the gift is in support of research in the Kunkel Laboratory. Donations will be acknowledged immediately for tax purposes and your gift will be recorded. Please send your donation to:
Children's Hospital Trust
1 Autumn St.
Boston, MA 02215
We would be happy to send a notice of the gift. If you want a notice sent, please indicate this and include the name and address of the individual that you would like us to notify.
Contributions are tax deductible to the extent provided by law. For questions about making a donation, call Sarah Roth at 617-355-4008 or firstname.lastname@example.org.
You can also help by raising public and legislative awareness of the different neuromuscular disorders 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 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!