Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members. Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe. Followng is a short list of results:
- 99% of parent/guardians said they loved their child with Down syndrome
- 94% of brothers/sisters expressed feeling of pride about their sibling
- 99% of people with Down syndrome said they were happy with their lives
As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome. The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents. Now, we have the largest and most comprehensive information to share about Down syndrome. Read more about how your organization can utilize this information.
What can you do now?
1. Download this press release regarding these articles. Please feel free to use this information in your communications to your members.
2. Contact your local media. These studies present a unique opportunity for your organization to share the real stories with your local reporters. Finding families whose stories resonate with the reported statistics is a wonderful way to generate local media attention. Please consider forwarding the attached press release to your media contacts.
3. Share the research. The journal has kindly made the articles accessible to everyone, even those who do not have a subscription. Please feel free to direct your members to the following links:
4. Contact your local physicians. Now you have the research to help secure meaningful meetings with your area physicians. Send the journal articles to your local obstetricians, geneticists, genetic counselors, midwives, neonatologists, and pediatricians. And, then ask them if you could meet with them to tell them more about your group. Ask about opportunities for your families to present their stories at Grand Rounds or other healthcare gatherings.
5. Contact your local medical, nursing, and genetic counseling schools. Ask if you could sponsor a "journal club" where students discuss the papers, and you bring along family members and self-advocates to add their perspectives.
6. Legislative efforts. Please feel free to reference the work in any legislative efforts that are targeted toward improving the lives of people with down syndrome.