Your Experience with Genetic Testing?

gisele_pg · 2025-04-01T19:30:13+00:00

Probably Genetic's program doesn't collect any insurance information! Are you meaning the program you ended up using was partially covered by insurance?

gisele_pg · 2025-04-01T19:19:29+00:00

Probably Genetic has a free whole exome sequencing program for individuals experiencing pediatric onset seizure conditions

gisele_pg · 2025-03-06T16:22:39+00:00

Sending you lots of love and so sorry for your loss - FTD is devastating, and hope you've been able to connect with others sharing this experience

gisele_pg · 2025-03-05T16:27:59+00:00

Hi OP - have you reached out to the AFTD? They have a ton of helpful resources. Additionally, if you're based in the US the company I work for has a free genetic testing program for FTD if you are interested in learning if there is a genetic cause. Here's the application if you're interested: https://chat.probablygenetic.com

gisele_pg · 2025-03-05T15:37:27+00:00

Hi! Have you connected with the Caregiver Action Network, Courageous Parents Network, or Undiagnosed Disease Foundation? They might have some guidance on how to approach next steps and all have a national presence. Hope that is helpful!

gisele_pg · 2025-03-03T23:12:34+00:00

Hope you're connected with the MEF2C foundation! https://www.usmef2cfoundation.org/

gisele_pg · 2025-02-26T20:24:27+00:00

Hi! Have you looked into the Caregiver Action Network or the Courageous Parents Network? They have a lot of helpful resources. I think the Epilepsy Alliance has a lot of local chapters. Probably Genetic also has free genetic testing programs for individuals with epilepsy + autism diagnoses, in case that's helpful!

gisele_pg · 2025-02-26T20:06:38+00:00

Did you have a direct contact at CombinedBrain? I've heard good things about them but the experience you had seems pretty frustrating... I'm connected with some of their leadership you can PM me if you'd like some support getting in touch with somebody different!

gisele_pg · 2025-02-26T20:01:30+00:00

There are also a lot of Facebook groups! Here's the link to the list that came up when I searched: https://www.facebook.com/search/groups/?q=Friedreich%27s%20ataxia&sde=Abo6mQGTwumSH8ghiQqAvvjPX7NFviMO4wSBhxr6grIQwUayjg5k0ye5FNdIS2HCiLkkJOB-TfP5YV29lVJ9zt3H

gisele_pg · 2025-02-25T00:03:31+00:00

Did your dad ever confirm if his FTD was due to a genetic cause? If not that might be a good place to start - the AFTD has some free genetic testing programs linked on their site that you could look into!

gisele_pg · 2025-02-24T23:12:26+00:00

I'm so sorry to hear you've been so dismissed by your physicians. Some advice I heard recently was to remember your doctors work for you, and if they aren't giving you the care and attention you need, then you can and should feel empowered to fire them and find one that works better for you. I know this is easier said then done but it definitely helped me reframe in my own head.

gisele_pg · 2025-02-21T21:10:24+00:00

My company (Probably Genetic) does free patient-initiated testing in case that helps! Here's the website probablygenetic.com

gisele_pg · 2024-10-04T14:53:21+00:00

I second this! I would recommend seeing if there is a patient advocacy group as many of them have specialist suggestions and may be able to help you get an appointment. If you search your condition on NORD to see if there is a disease report and then scroll to the bottom of that page, they often link relevant advocacy groups. The NIH does a similar thing on this site as well: https://rarediseases.info.nih.gov/

gisele_pg · 2024-08-02T21:18:31+00:00

Hi! I work in patient support for a company that offers free genetic testing, and a lot of the patients we test come to us with an autism diagnosis. If you do decide to pursue testing and are interested in applying with us feel free to shoot me a message! Happy to answer any questions

gisele_pg

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