TSC Talks! No Holds Barred~Advocate Extraordinaire! Daniel Price~TSC, Rare Disease, Adoption & LGBTQ Advocate

TSC Talks!

“You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin.
This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He’s Auxiliary Adult Regional Coordinator West and has been an active volunteer for the last 3+ years. Working in the airline/travel industry part-time, has given Daniel the opportunity and scheduling flexibility to travel the country and to parts of the globe to participate in TSC conferences and other events such as; Step Forward to Cure TSC walks in Seattle as well as Northern and Southern California; Sound Bites in Minnesota; Regional Conferences in Houston, San Diego, Saint Louis and Los Angeles; and the 2018 TSC World Conference in Dallas. Recently he attended the TS Alliance Board Meeting in Chicago and the 2019 March on Capitol Hill in Washington, DC. He’s flown to Melbourne, Australia to help them with their first Comedy for a Cure.
Daniel was adopted from mainland China at the age of 3 and diagnosed with TSC at the age of 6 when visiting a dermatologist to examine the red bumps on his face. He is the only family member with a rare genetic disease and states, “I've had seizures as a younger child. Development delay issues in K through 12 education and had a special education program. I've gone through a speech and language program, was kicked out and then put back in later in my K to 12 programs and have had many other challenges through trying to maintain in work, living and other daily challenges as well facing life “
Daniel’s mother sought the best treatments for Daniel as she could at the time but the TS Alliance was just being formed and there was not as much information available about TSC as there is currently. Eventually, Daniel found the TS Alliance, stating, “I reached out to- I think the headquarters in DC and they mailed me out to a couple of people in the Washington area. And they email-connected me to someone named Gloria, and I was like, Oh, okay. And then she's said that we're going to have a picnic coming up in Seattle. So, then I go to this picnic and meet other people (with TSC & families), and it changed my life. It changed the way I saw it. So yeah. I've learned a lot from Gloria and the other people that within the TSC community within the Pacific Northwest”
Seeking better medical care, Daniel traveled to the TS Clinic in Cincinnati and was excited to be able to visit all TSC related specialists in one location and talk to medical professionals with specific expertise in treating TSC. He carries a book on TSC with him to every appointment and hospital visit to share with any and all of the treating team to not only make sure they have a quick reference guide on TSC at their fingertips but also raise awareness of the condition and educate as many people as possible.
Outlining ongoing challenges Daniel states, “I mainly struggle with TAND, (stands for) tuberous sclerosis complex neuropsychological disorder. I struggle a lot with depression, anxiety, mood swings, socializing with other people. And many people just don’t see it They see a regular person going to work, paying their bills, driving, going to school, but they don't see the outcome of what TAND or TSC. They don't see the real picture. They don't see the big picture of what TAND can do. I do get mood swings. There are times where I just want to like shut people off and shut off from the world when it's just too much sometimes”
We discuss his return to China, with his entire family, and was able to meet caregivers and other members of the local community who remembered Daniel and what a moving experience this was. Daniel talks about coming out as a gay man being an active member of the LGBTQ community and his desire to find connections with others who are in this community that also have a rare disease.
“So I came out four or five years ago…I came out as a gay man, a young person questioning my sexuality, but also I was trying to (a couple years ago), connect with people with a rare genetic disease, but also who have been adopted and part of the LGBTQ community as well. I have not been able to find anyone. I've been to other organizations on the west coast and other people who are LGBTQ but have not been able to connect with other people that have the other two aspects.”
There’s a lot more in this episode. In conclusion, Daniel states eloquently; “the most meaningful thing is being able to advocate at different events, socializing with other people within the TSC community, connecting with them, learning from them. But being a voice for those that don't have…or can't give a voice. Learning how to cope with things from other people, learning their styles, learning how they advocate for change, being able to go to events and help raise money to help eradicate this disease. Being able to be that change, to help other people who can't help themselves or help other people within the community. They may be a little shy or closed off from other people, not only just here, not only just in the TSC community, but the LGBTQ community and adoption community, or any community. I am thankful to have the privilege to advocate, to be able to change the way other people perceive TSC Tuberous sclerosis complex-a rare genetic disease, adoption, LGBTQ or any of those communities.”
Here are Daniel’s links!
Facebook: https://www.facebook.com/daniel.price.1694
Instagram: https://www.instagram.com/pricendaniel/
LinkedIn: https://www.linkedin.com/in/daniel-n-price-7270156a/
https://www.tsalliance.org/wp-content/uploads/2019/06/06-June-Adults-with-TSC-Newsletter.pdf
https://www.rareiscommunity.com/2019/11/27/navigating-a-forever-home-with-a-rare-disease-daniels-story/
Links on Adoption:
https://www.adoptioncouncil.org/
http://www.adoptioncouncil.org/2020-gala https://adoptionsbygladney.com/ http://www.gladneyasia.org/index.html
http://cccwaen.mca.gov.cn/
China Center for Children's Welfare and Adoption (CCCWA) and Bridge of Love Adoption Services (BLAS) https://www.ccaifamily.org/
https://onesky.org/
http://moveablefest.com/nanfu-wang-one-child-nation/?fbclid=IwAR3e4i5m-Ajkl1Bj5efLC88IJX7lnIFw1Py0qqBM66kv29tLog97RjSjlX4
https://www.holtinternational.org/
LGBTQ links for Asian Americans who are LGBTQ:
https://www.facebook.com/pg/crn.ngo/about/
https://gapafoundation.org/ in SF
Stay tuned for more, including information about a new podcast hosted by Thomas Van Antwerp, Chief Development Officer of Nicky’s Gardens of Hope discussing issues related to “The Cliff”….turning 21 with Autism, IDD, TSC…”, appropriately named, “Over The Cliff”. (https://nickysgardensofhope.com). Thanks for tuning in! https://tsctalks.com
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