The Big 7 Foundation

The Big 7 Foundation Hope for today. Cure for tomorrow.

Dedicated to funding research to improve the lives of those affected by Sturge Weber Syndrome, Glaucoma, Port-Wine Stain and Epilepsy. The Big 7 Foundation is a 501(c)(3) non-profit, for impact, organization dedicated to funding research to improve the lives of those affected by Sturge Weber Syndrome, Glaucoma, Port-Wine Stain and Epilepsy. Our mission is to fund innovative research that will allo

w those affected by Sturge Weber syndrome to have the opportunity to live their best life. Provide families with mental health support and generate informational material to arm parents with important questions to ask their doctors when going in for treatments.

Know your rights…If your child is experiencing seizures you can request to add a teachers aide to your Childs IEP. The ...
12/01/2022

Know your rights…

If your child is experiencing seizures you can request to add a teachers aide to your Childs IEP. The district may likely fight it but would eventually work to honor it.

If you have been denied services find your local alternative dispute representative.

Hey SWS families. It’s been awhile. But we are coming back ready to share lots of new info focused on parent education, ...
10/08/2022

Hey SWS families. It’s been awhile. But we are coming back ready to share lots of new info focused on parent education, alternative therapies and overall well being for the whole family♥️

What have been your biggest concerns or worries when it comes to your journey with ?







Calling all SWS families ♥️ I hope you can join this Saturday’s family virtual meeting ⭐️Personally speaking when I atte...
09/15/2022

Calling all SWS families ♥️ I hope you can join this Saturday’s family virtual meeting ⭐️

Personally speaking when I attended the last in person SWS symposium. That is we’re I started to grow in my ability to embrace our reality of living with SWS rather thank brace myself with what was to come.

The information was so useful and helped me get things in place (like therapy, proper tools or toys, etc) to@help give Sloane the best life possible.

Even better, you meet some of the most amazing families who Totally get your journey.

Please DM if interested in attending

Have you ever found yourself thinking “I can’t do this” “I give up”“There’s no hope”“How am I going to survive this”“How...
06/14/2022

Have you ever found yourself thinking
“I can’t do this”
“I give up”
“There’s no hope”
“How am I going to survive this”
“How”
“Why”

If you have, please join me and Ivan live for a live talk on shifting our mindset during difficult times.

♥️This Wednesday 8am PST ♥️

Ivan Nikolov is a Mindset and Transformation Coach. Through his extensive training and practice in directing radical transformation in others, his work as a Senior Community Manager at Mindvalley, and his diverse background (including a baker, a fitness trainer, and a fi****ms instructor),  Ivan has developed a high level of mastery in the arena of mindset for purposeful living, fulfillment, and inner peace.

Join me as I talk to Ivan about ways to shift our mindset when we are dealing with difficult times. Life is not easy and add the layer of trying to keep it together while advocating for your child and also not leaving any other children out of that picture. Let’s not forget to mention your significant other and most importantly yourself.






This process was pretty overwhelming for me. Assessments, interviews, some pretty serious meetings, lots of signatures....
04/16/2022

This process was pretty overwhelming for me. Assessments, interviews, some pretty serious meetings, lots of signatures. And I didn't even feel like I truly knew what my options were...

It can be a bit much. But it all starts with just one step. Left foot, right foot. One step at a time.

Having an IEP in place has truly helped ensure that Sloane has all that she needs to support her in succeeding in school by providing things like:
- - sitting her closer to the teachers and white board.
- - providing her special therapy to help her adapt to the school playground
- - vision therapy and so much more

Check out: https://serr.disabilityrightsca.org to learn more about your rights.




Happy 4th Birthday Our Dearest Sloane,4 years ago today you came into our lives and brought us all such beautiful unders...
01/05/2022

Happy 4th Birthday Our Dearest Sloane,

4 years ago today you came into our lives and brought us all such beautiful understandings of what is really important in life. That's not to say you didn't bring us those understandings without the scare of our life. A journey that I NEVER believed I was capable of taking, let alone surviving.

And today you turned 4! It's not what I had imagined after receiving your diagnosis.

There are so many times when my heart starts to flood with love when I just look, when you are being a ham, dancing, signing, saying some of the funniest things or when I watch you as you fall asleep. Yet right before that feeling of love overflowing, right before it gets topped off, that thought comes into my head. That thought that says "well let's hope this doesn't change".

That chatter and back and forth of me fighting to be present. "What matters is she is good, right now"

Yet as much as I work on be present there is that little speck that reminds me or limits me from filling my heart up to the top. "But what if tomorrow is different" "what if next year is not like this moment"

And I work hard on practicing not living in a future that hasn't happened. Not living in the past that is already behind us. But just being in the NOW.

But I'm still working on that skill. As you can see...

This may just be outright crazy...when I say that sometimes I intentionally caress your forehead the exact same way each time as I say I love you. So that if, if another seizure were to occur when you weren't responding to us. That maybe. Maybe I could just caress your head the same way and maybe, just maybe you would feel me saying "i love you". Hoping, just hoping, that it might be enough to keep you fighting through it.

But as you can see I still need to grow, still got some work to do. I just love watching you become who you are. And I want to learn how to love that just as it is in that very moment, right now as it is. Tomorrow as it will be.

So happy birthday to our resilient, brave, loving, funny potty mouth of a girl!

I hope all your dreams come true.
We lobe you endlessly.

Wishing you and your family a very happy holiday season. Wishing our beautiful SWS families a little extra love ,hugs,k...
12/24/2021

Wishing you and your family a very happy holiday season.

Wishing our beautiful SWS families a little extra love ,hugs,kisses and even more so laughs from the pit of your belly.


It’s been awhile and not the first post we want to post as we get back into the groove of things. But the little one cau...
12/01/2021

It’s been awhile and not the first post we want to post as we get back into the groove of things. But the little one caught COVID.

Her symptoms are low grade fever. (FEVER=SCARY) but thankfully it’s low grade. Let’s hope it stays that way or better yet goes away.

She also has a slight runny nose.

We are giving her quercetine , zinc , vitamin C w/ liposomal, Vitamin D+K , some hydrate and a ton of love, hugs and kisses.




The 2nd brother in the family.  He is loving and always smiling.  He brings laughter to the family in his pure innocence...
10/05/2021

The 2nd brother in the family.  He is loving and always smiling.  

He brings laughter to the family in his pure innocence!  He is constantly throwing a ball.  

Just ask any of his sisters that wake up to the sound of a ball hitting the wall!  He finds happiness in pretty much anything that has his family will do with him.  

And of course following closely to his brother, loves to game if he can.





The oldest boy in the family. He is the one who wears his heart on his sleeve, always thinking of others and loves to b...
09/24/2021

The oldest boy in the family. He is the one who wears his heart on his sleeve, always thinking of others and loves to be the life of any event. He finds joy in making people laugh and finds peace in diving into a great book or building something. Should I dare leave out GAMING?! That would be so suuuuus!





She is the 2nd oldest. The affectionate, comforting and loving 2nd biggest sister. She loves being in nature, going on...
09/15/2021

She is the 2nd oldest. The affectionate, comforting and loving 2nd biggest sister. She loves being in nature, going on random adventures, and all things related to film. She finds joy in raising PLANTS, reading and also crystals!



ALEXIS:She is the eldest of 5. The giving, protective and loving big sister. She is a family gal who loves to travel, ...
09/14/2021

ALEXIS:

She is the eldest of 5. The giving, protective and loving big sister. She is a family gal who loves to travel, hike, camp and finds peace in yoga, meditation and crystals! She has ambition and drive like no other. Guess it’s the Trojan spirit in her. Always fighting for the things she cares about! Fight On!



Address

1920 Hillhurst Avenue, Unit #V978
Los Angeles, CA
90027

Opening Hours

Monday 8am - 2pm
Tuesday 8am - 2pm
Wednesday 8am - 2pm
Thursday 8am - 2pm
Friday 8am - 2pm

Website

Alerts

Be the first to know and let us send you an email when The Big 7 Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to The Big 7 Foundation:

Shortcuts

Featured

Share

Category