Talk to a professional who specializes in Angelman syndrome genetics.
Schedule a free, one-on-one virtual meeting with our certified genetic counselor, Niki Armstrong.
As a genetic counselor, Niki understands complicated genetics. As a member of the FAST team, Niki has an in-depth understanding of AS specifically.
Available to parents and caregivers in the United States, these meetings give families the opportunity to discuss their questions with a certified genetic counselor who specializes in Angelman syndrome. You may have already met with a genetic counselor when your loved one was initially diagnosed or to help coordinate family member testing, but this will be a little different. Niki’s role at FAST enables her to answer those general AS genetics questions and also provide a deeper dive as a genetic counselor specializing in Angelman syndrome.
Hear From Families Who’ve Met With Niki
Navigating Therapeutic Development and Clinical Trial Decisions
Many families are interested in learning more about therapeutic development or clinical trials. As healthcare professionals, genetic counselors are trained to help families understand complicated scientific and medical information and then use that knowledge to make the best choices for their loved one and their family as a whole. Of course, ultimately, any decisions about participating in a clinical trial should be made by the family in collaboration with a health care team who know the individual living with AS and are familiar with the research.
How Niki Can Support the AS Community
Niki can...
- Explain the difference between a clinical trial and an observational study and what families may want to think about when considering enrollment.
- Offer insight on how the development, by industry, of a potential drug therapy generally works.
- Help families understand the listed enrollment criteria for each clinical trial for Angelman syndrome, especially when the enrollment criteria includes genotype requirements.
- Answer general questions about FAST's Roadmap to a Cure for potential treatments in AS and how each approach is hoped to work, specific to each genotype.
- Provide additional resources and connect you with supportive people as you are navigating the world of AS.
- Discuss how your participation in registries and natural history studies fit into the drug development process.
Niki will NOT...
- Tell you if your loved one should join a clinical trial.
- Tell you which clinical trial your loved one should join.
- Enroll your loved one in any clinical trial.
- Prescribe medicine or direct medical care.
Schedule Your 1:1 Private Appointment
Do you live outside the USA?
These 1:1 meetings are only available to people currently in the USA. However, if you are located outside of the USA, you can email questions to genetic.counselor@cureangelman.org.
Frequently Asked Questions about Genetic Counseling
What is genetic counseling?
Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic conditions. This process includes education about inheritance, testing, management, prevention, resources and research, as well as counseling to promote informed choices and adaptation to the chances or condition.
Why is genetic counseling helpful for families living with Angelman syndrome?
AS genetics are complicated! Genetic counseling can answer your questions and help your understanding of Angelman syndrome. It could include reviewing your loved one’s genetic test report, talking about family planning, discussing additional testing of your loved one or other family members, or learning more about a genotype or genetic variant.
Are there any costs?
No, Niki is an employee of FAST and this service is provided for free based on FAST’s support.
How does scheduling work?
You schedule at a time convenient for you using the Calendly platform. When you schedule, you choose whether to talk with Niki by phone or over Zoom and provide some information about you/your loved one, what you would like to talk about, and how you learned about FAST’s genetic counseling.
Does my information stay private?
Yes, similar to any visit with any healthcare provider, your/ your loved one’s private health information and the topics covered during your 1:1 discussion will not be shared with FAST or anyone else, except in those circumstances required by law, like reporting abuse or public health threats. If you want to be connected with FAST, you can choose to share your email address/name, but that is completely up to you.
Why can’t I schedule a 1:1 if I am outside the US?
Niki’s certification and licensure are US-based, and other countries have different regulations around genetic counseling and patient-facing roles. Consequently, Niki cannot provide formal genetic counseling. If you are outside the US, she can provide general information and answers to questions and help to connect you with local providers.
Can I schedule with Niki about other genetic conditions? Or what if I suspect AS but I don’t know for sure yet?
Niki specializes in Angelman syndrome, so she can only provide genetic counseling about AS. If you or a provider suspect Angelman syndrome, you or the provider can schedule with Niki, and she can help connect you to resources to get genetic testing.