CACNA1A Community Conversations/ Meetups
Join a Group Meeting - We look forward to seeing you online!
MEET - SHARE - LEARN
Community Conversations/Meetups provide opportunities for members of the global CACNA1A community to gather virtually to meet others impacted by a CACNA1A-related disorders diagnosis, share resources, and learn from one another. These groups provide a safe space to ask questions and share understanding, encouragement, and hope.
Monthly Zoom Meetup: For Patients/Parents/ Caregivers
Join Us: Saturday, May 16th at 11am ET
Group Description: Please join us for informal chats on the third Saturday of every month, where we can all get to know each other, share experiences, and ask questions. There’s nothing better than connecting with others who are on a similar journey!
About the Facilitator: Lisa Manaster is our Board President and Co-Founder of the CACNA1A Foundation. She is eager to help build awareness and accelerate the discovery of treatments for CACNA1A-related disorders. She lives in Connecticut and has three children, a daughter-in-law, and two grandchildren. After years of genetic testing, her youngest daughter, Emily, finally received a diagnosis of CACNA1A in 2017 at the age of 20. While Lisa does not believe earlier identification would have changed their path, supporting research for a cure has become her passion. Lisa has worked as both an advocate and a special educator.
Community Crew (formerly Grandparents & Extended Relatives Group)
Join Us: Sunday, May 24th at 3pm ET
Group Description: Grandparents and other relatives are significant, yet often overlooked, members of the family support network. Many have the gift of time and the resources to provide much-needed respite for caregivers and are eager to spend precious time with their grandchildren. This group offers a tremendous opportunity for grandparents and other relatives (aunts, uncles, brothers, sisters, etc.) to connect and share strategies for supporting loved ones affected by CACNA1A. Additionally, we aim to provide emotional support to each other and share ideas for utilizing our talents to further the mission of the CACNA1A Foundation. We hope you will join us! If you are a parent of a child with CACNA1A and think members of your extended family would be interested in this group, please send them the link so they can sign up.
About the Facilitator: Hi, I am Theresa Spong. I live just outside of Austin, Texas. I am the GiGi of a beautiful 2-year-old diagnosed with CACNA1A. We are very blessed to live close to our granddaughter and are able to help support our daughter and her family in so many ways. I wanted to create a Grandparents & Extended Relatives Group for the CACNA1A community to help connect with other grandparents and extended relatives who support our CACNA1A Champions.
DEE/Severe Hemiplegic Migraine Meetup Group
Join Us: Sunday, May 31st at 4pm ET
Group Description: You are NEVER alone. Join a CACNA1A community conversation group for parents and caregivers of individuals living with Developmental and Epileptic Encephalopathies (DEEs) and/or Severe Hemiplegic Migraine caused by a CACNA1A variant. We encourage you to take advantage of the opportunity to engage with others in a safe and supportive environment.
DEEs represent a group of devastating epileptic disorders that appear early in life. They are characterized by drug-resistant generalized or focal seizures, persistent severe EEG abnormalities, and cognitive dysfunction or decline.
Severe Hemiplegic Migraines (SHMs) are distinct from classic or familial hemiplegic migraines. SHMs include migraine with aura where the aura consists of weakness of the face, arm, and/or leg, but SHMs can also be progressive and result in uncontrolled seizures and/or potentially life-threatening brain swelling. During an SHM, alteration in consciousness can occur and the one-sided weakness becomes evident after seizures are controlled. Individuals susceptible to SHMs may also have symptoms in between attacks, including delayed development, balance difficulty, and abnormal eye movements (nystagmus or paroxysmal tonic upgaze).
About the Facilitator: My name is Shanna Tolbert and my husband, Terry, and I live just outside of Atlanta with our girls, Ireland (7) and Brooke (3). Ireland has a CACNA1A variant that causes DEE (Developmental and Epileptic Encephalopathy), ataxia, autism and severe hemiplegic migraines. I have found "my tribe" among other CACNA1A-related DEE moms who have supported us through hospital stays, medication changes, the trauma of severe events and the challenges of daily life. I'm thankful for the opportunity to facilitate supportive connections during our support meetings with other parents who truly get it.
If you would like to start a new Meetup Group, please email shira@cacna1a.org
Guidelines for CACNA1A Community Conversations/Meetups
As patients, parents, caregivers and family members, we like to say that we are STRONGER TOGETHER! We hope you will rely on one another for support, encouragement, understanding and wisdom. In doing so, we ask that you please adhere to the following guidelines:
This is an inclusive space where we value all perspectives, ideas and backgrounds. Please show compassion and kindness, and be respectful and accepting of each other.
Unless you are a medical professional, do not offer medical advice.
Participants may be sharing private information. Please maintain the utmost respect for confidentiality.