Olivia
Online
SYNGAP1 Foundation
@Syngap1Fnd
SYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
Washington, DC
Joined December 2014
3.2K Following
2.6K Followers
10.7K Posts
Happy 4th of July Weekend!
Happy 4th of July!! Bean was great this week. We went on a short adventure through downtown DCβhe was mesmerized! So much has happened in the last 16 years, & I'm grateful for God's blessings. Never give up and trust in faith! #POV #Syngap1 #ferriswheel @mlweldon5 @Imaginedragons
Happy 4th of July! π Beckett did so good! No meltdowns, just a few sensory overloads. He saw so much of DC and drove through Maryland & Virginia! #SYNGAP1 will never defeat my boy! @mlweldon5 πππ #IndependenceDay #FamilyTime πππ #SYNGAP1 will never defeat my boy!
Yes! Itβs International #SYNGAP1 Awareness Day!
We are the proud parent organization that encouraged our worldwide Syngap1 Families to spread awareness in their own nations!
To donate: https://t.co/EF64IEz6CD
Happy Father's Day to all the incredible dads out there, especially those with special needs children. Your strength, patience, and endless love make the world a better place. Today, we celebrate you and the unique journey you embrace every day. Thank you for your unwavering support and for being a source of inspiration. #HappyFathersDay #SpecialNeedsDads #UnconditionalLove
Who to follow
stxbp1
@curestxbp1
Non-profit dedicated to ending STXBP1-related disorders, rare neurodevelopmental and epileptic encephalopathies, and spreading awareness of this rare disease.
Luke Rosen 
@lukebrosen
Founder of https://t.co/GkrwXhfkoy and https://t.co/eWtcezWeJc. Firefighter. Works with families affected by neurological diseases and cancer. Baseball and hockey. Proud dad.
KAT6 Foundation
@KAT6foundation
We support individuals who are living with KAT6A and KAT6B syndromes around the world. 𧬠We advance research aimed at developing treatments.
The struggle is real! https://t.co/ZQlHJHgkHy
Registration is now open for the Child Neurology Foundationβs course for caregivers titled, βFrom Surviving to Thriving.β
This course is free with code CNF25. Course details and registration can be found at the following link: From Surviving to Thriving https://t.co/0OdlEdk6lA
Please note that caregivers should prepare to attend 3 live Zoom sessions facilitated by Brad Thompson, licensed counselor and dad to a child with complex healthcare needs.
This course starts July 17th and runs through July 31st. We are limiting enrollment to 30 participants so encourage your community to enroll quickly.
Our Founder, Monica Dudley-Weldon will be meeting our ONLY #SYNGAP1 family living on the Wagmatcook First Nation, Nova Scotia!
We are honored and beyond blessed to be raising awareness for #SYNGAP1 to an amazing supportive community!
Thunder Feather Drummers and First Nation Elder, Molly Pierro will be opening the SYNGAP1 workshop with a ceremonial event with drumming and prayer!
The History and Culture of the Wagmatcook First Nation
The Wagmatcook First Nation is a Mi'kmaq community in Nova Scotia, Canada. The Mi'kmaq, indigenous to the Northeastern Woodlands, traditionally inhabited the Maritime Provinces, parts of Quebec, and Newfoundland.
Pre-Contact Era
The Mi'kmaq were semi-nomadic, living off fishing, hunting, and gathering, with a social structure based on kinship and clans. Their territory was divided into districts, each governed by a chief and a council of elders.
European Contact and Colonization
The 16th and 17th centuries brought European explorers, marking a significant change. Initial interactions involved trade, but European colonization profoundly affected the Mi'kmaq. Allied with the French during colonial conflicts, the Mi'kmaq suffered significant losses due to warfare and disease.
19th and Early 20th Century
The 19th century brought hardships as European settlement patterns and laws marginalized the Mi'kmaq, leading to the loss of traditional lands. The Indian Act of 1876 imposed further restrictions, and many Mi'kmaq were forced onto reserves, including Wagmatcook, established in 1881.
Cultural Revival and Modern Era
Despite colonization, the Mi'kmaq, including Wagmatcook, maintained a strong cultural identity. Recent decades have seen a resurgence in Mi'kmaq language, traditions, and governance. Institutions like the Wagmatcook Cultural and Heritage Centre promote this cultural revival. The community is active in economic development, education, and political advocacy, striving to improve the well-being of its members.
Contemporary Issues
Today, the Wagmatcook First Nation addresses modern challenges while preserving its cultural heritage. Land rights, environmental protection, and self-governance remain central to their efforts for greater autonomy and sustainability.
Conclusion
The history of Wagmatcook reflects the resilience and adaptability of the Mi'kmaq people. Despite centuries of challenges, the community continues to thrive and preserve its cultural heritage as an integral part of the Mi'kmaq Nation in Nova Scotia. #syngap1awareness #novascotia #autism #epilepsy
π Join Us for Syngap Awareness Day! π
Syngap Awareness Day is a global event where families affected by Syngap come together online to celebrate our children, our community, and raise awareness about Syngap. Despite the challenges, our families find beauty and joy every day.
π
Why June 21?
The Syngap gene is on chromosome 6, loci 21.32 on the p arm, making 06/21 the perfect day to celebrate. Itβs also International Music Day, and our kids love music!
Our goal is to make every Syngap-affected family feel part of this amazing community. By raising awareness, we hope families with undiagnosed children might find the answers they need and discover their own community.
Join our event and donate: https://t.co/tNf7RKXMV5
#SyngapAwarenessDay #CelebrateOurChildren #RaiseAwareness #SyngapCommunity #InternationalMusicDay #NotAlone #SYNGAP1
π Join Us for Syngap Awareness Day! π
Syngap Awareness Day is a global event where families affected by Syngap come together online to celebrate our children, our community, and raise awareness about Syngap. Despite the challenges, our families find beauty and joy every day.
π
Why June 21?
The Syngap gene is on chromosome 6, loci 21.32 on the p arm, making 06/21 the perfect day to celebrate. It's also International Music Day, and our kids love music!
Our goal is to make every Syngap-affected family feel part of this amazing community. By raising awareness, we hope families with undiagnosed children might find the answers they need and discover their own community.
Join our event and donate: https://t.co/tNf7RKXMV5
#SyngapAwarenessDay #CelebrateOurChildren #RaiseAwareness #SyngapCommunity #InternationalMusicDay #NotAlone #SYNGAP1
Honoring the brave souls who made the ultimate sacrifice for our freedom. πΊπΈ
This #MemorialDay, we remember and express our deepest gratitude to those who served and gave their lives for our country. Let us never forget their courage and dedication.
#HonorTheFallen #RememberAndRespect #FreedomIsNotFree #USA
We are saddened at such a great loss! Our organization is grateful for the research. They began on #SYNGAP1 and 2014 when we began our organization. They are part of our #SYNGAP1 Legacy and will continue to be! @SimonsFdn
It is with great sadness that the Simons Foundation announces the death of its co-founder and chair emeritus, James Harris Simons. Jim was an award-winning mathematician, a legendary investor and a generous philanthropist. https://t.co/w48DhauUVj
Happy birthday Logan! May your day be filled with all your favorite things! #birthday #SYNGAP1Strong #LoveAndHope #spotlight #HappyBirthday #happybirthday #SYNGAP1Warrior #syngap1 #friends #CelebrationTime #Birthday #BirthdayCelebration #RareDisease #Family #Hope #Spotlight #SYNGAP1
Today, and every day, we celebrate the extraordinary love, strength, and grace of all mothers.
Happy Mother's Day to the incredible women who shape our lives with their unconditional love and endless support. π #MothersDay #LoveYouMom
π’ NEXT WEEK! π Join us for a Lunch and Learn webinar hosted by Northwestern Mutual Wealth Management Company on Tuesday, May 7th at 1:00 PM EST / 12:00 PM CST.
Gain valuable insights and expand your financial knowledge on financial planning for individuals with special needs.
Donβt miss out!
π Zoom Meeting Link: https://t.co/YZloIv7k1n
Meeting ID: 885 0075 2541
Passcode: 081270
#Webinar #LunchAndLearn #FinancialLiteracy #NorthwesternMutual #WealthManagement #Investing #FinanceEducation
π Exciting news! π
Join us for the kickoff of SYNGAP1 Awareness Month with a special guest: the Founder and Former President, now Policy and Research Director of the Syngap1 Foundation, @mlweldon5
We're also thrilled to welcome Martha Lewis and her daughter Annie Peck, the first child in Nova Scotia identified with SYNGAP1-related disorders sharing her story.
Let's gather at the Wagmatcook Cultural & Heritage Centre, hosted by the Wagmatcook Tribe, a First Nation Community.
Together, we'll raise awareness, share stories, and unite in support. For more information, email [email protected].
Don't miss out on this inspiring event! #SYNGAP1Awareness #SYNGAP1 #NovaScotiaStrong ππ§ β¨
Thrilled to share our journey with my son's rare diagnosis of SYNGAP1-related diseases!
It's been a rollercoaster, but we're grateful for the support and awareness brought by sharing our story. Huge thanks to the @GWtweets journalism student, Aaron Shires who found us by happenstance online and helped shed light on our experience.
Check out the full story here: https://t.co/qZXYKmI1nl
#RareDisease #SYNGAP1 #Grateful
π Gratitude Alert! π
We're overjoyed to commemorate a decade of discovery with the SYNGAP1 Foundation alongside the incredible duo, Colby Blakesley and her son Jon!
π Their story is a testament to the transformative power of research and family support.
βToday, we extend our deepest appreciation to the SYNGAP1 Foundation for their unwavering commitment to inclusivity and empowerment. And thank you to Monica Weldon whose vision and dedication made it all possible!β π
~ Colby
#DecadeOfDiscovery #SYNGAP1Foundation #GratitudeGalore π #SYNGAP1
π’ Exciting news! π Join us for a Lunch and Learn webinar hosted by Northwestern Mutual Wealth Management Company on Tuesday, May 7th at 1:00 PM EST / 12:00 PM CST.
Gain valuable insights and expand your financial knowledge on financial planning for individuals with special needs.
Don't miss out!
π Zoom Meeting Link: https://t.co/YZloIv7k1n
Meeting ID: 885 0075 2541
Passcode: 081270
#Webinar #LunchAndLearn #FinancialLiteracy #NorthwesternMutual #WealthManagement #Investing #FinanceEducation
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