NF California

Bay Area NF Support Group at Stanford
2026-08-01, 2026-04-04 | Stanford University, 453 Quarry Road, Stanford, CA, 94304, United States
Come join us for a discussion about NF and how it has affected your family. With the support of the Lucile Packard Children’s Hospital, this group brings together parents, grandparents, friends, and family of children and teens who have been diagnosed with Neurofibromatosis. The group is open to all families, whether your child is being treated at Kaiser, Stanford, UCSF, or elsewhere in the Bay Area.
Under our current schedule we meet three times a year — on the first Saturday in April, August, and December. We will send more information to persons on our mailing list closer to the time of the meeting. If you are not on our mailing list but would like to get on the list to receive meeting information (or if you are on our mailing list but would like to get off), email us at NFsupport@sonic.net.

Huntington Beach Day
2026-07-18 09:00 - 13:00, 2025-07-12 09:00 - 13:00 UTC | Bolsa Chica State Beach, 17851 Pacific Coast Highway, Huntington Beach, CA, 92649, United States
Join us for a relaxing family style picnic day at Bolsa Chica State Beach!

The event is scheduled from 9:00 a.m. to 1 p.m, but all are welcome to stay longer if they wish! (And, early birds are especially welcome to help stake out space and set up a few canopies.)

Lunch will be a BBQ potluck; bring a side dish to share. Hamburgers, hotdogs, grilled vegetables, and water bottles will be provided. We will meet close to lifeguard stand #24 at Bolsa Chica State Beach in Huntington Beach. Don’t forget your towel, beach chair, sunglasses and sunscreen!

The event is free, but parking is approximately $20 because it is a State Park. Check out your local public library for the state park parking voucher.

Please RSVP via this link. This helps us to get an idea of how many NF friends to expect. Those who attend always mention how wonderful it is to spend time together, so we hope that you can join us!

If you have questions you can email Katie: katie.sperring@nfcalifornia.org

RSVP

NF California Virtual Meet-Up
2026-07-02, 2026-06-04, 2026-05-07, 2026-04-02, 2026-03-05

Rockin Hops Music Festival 2026
2026-05-16 - 2026-05-17 | Solano Brewing Co, 5500 Weber Road, Vacaville, CA, 95687, United States
Rockin’ HopsMusic Festival
Benefiting Neurofibromatosis California
May 16 & 17, 2026

NF1 Family Day Mini Symposium
2026-04-25 10:00 - 14:30 (America/Los_Angeles) | California State University, Sacramento – Folsom Hall, 7667 Folsom Blvd, Sacramento, 95819, United States
(Download PDF Of Flyer by Clicking Here)

Reserve Your Spot Today ~ Register by April 15, 2026
This will be a hybrid meeting. The cost is $10.00 per personMain Session (hybrid) Kids Club and Young Adult (in-person only)
Join us at California State University, Sacramento for NF1 Family Day Mini Symposium and Kids Club. an educational event designed for patients, families, educators, and caregivers affected by Neurofibromatosis (NF). Hear directly from experts in Neurofibromatosis and connect with others who understand your journey.
Hosted by CSU Sacramento’s Department of Communication Sciences and Disorders in partnership with Neurofibromatosis California, this program will offer insights, resources, and an opportunity to build community and support.
This will be a hybrid meeting. The cost is $10.00 per person
DATE: Saturday, April 25, 2026
Schedule of Events
9:30 am Check- In Begins in Folsom Hall Lobby10:00 am Welcome RemarksSpeaker #1: Suma Shankar – Current topics in Genetics and NFSpeaker #2: Vanessa Merker – Patient Engagement in NF Research11:50am-12:30pm LunchSpeaker #3: Kaity Holden – Executive Functioning in NFSpeaker #4: Heather Thompson – Communication Supports for Children with NF1: Accessing Referrals and Removing Barriers to Service2:30 pm Closing Remarks
Kids Club: (ages 3-17)Attention all parents! Kids Club is available for our NF1 Family Day. Kids Club activities will take place indoors at the Maryjane Rees Language, Speech and Hearing Center on the second floor of Folsom Hall. When registering, please let us know how many kids you will be bringing, their ages, and if there are any medical precautions or accommodations they will need to participate in our Kids Club activities.
Young Adult Group: (ages 18-29)
LOCATION:California State University, SacramentoFolsom Hall7667 Folsom Blvd.Sacramento, CA 95819
Reserve Your Spot Today ~ Register by April 15, 2026
PRINTABLE FLYER
Don’t miss this chance to learn, ask questions, and connect with your NF community.

Guest Speakers Include

Suma Prabhu Shankar, M.D., Ph.D.

UC DavisChief, Genomic Medicine Division, Department of Pediatrics
Director of Precision Genomics
Professor, Departments of Pediatrics and Ophthalmology

Vanessa Merker, Ph.D.

Harvard Medical School
Assistant Professor of Neurology
Investigator, Asst Prof (M)
MGBCI Faculty Neuro Med Onc MGPO, Mass General Research Institute

Kaity Holden, MS

Sacramento State
Speech-Language Pathology, Department of Communication Sciences and Disorders graduate, class of 2027

Heather Thompson, Ph.D., CCC-SLP

Sacramento State
Department Chair, CSAD2B Coordinator, Professor
Department of Communication Sciences &
Disorders College of Health & Human Services

Cornhole for NF
2025-09-27 11:00 - 18:00 UTC | Solano Brewing Co, 5500 Weber Road, Vacaville, CA, 95687, United States
Join us at Solano Brewing Co for some Cornhole fun!

NF Family Day and Mini Symposium
2025-08-30 09:45 - 15:00 UTC | California State University, Sacramento – Folsom Hall, 7667 Folsom Blvd, Sacramento, 95819, United States
Join us at California State University, Sacramento for “Ask the Doctors”, an educational event designed for patients, families, educators, and caregivers affected by Neurofibromatosis (NF). Hear directly from experts in genetics, dermatology, communication, and hearing, and connect with others who understand your journey.
Hosted by CSU Sacramento’s Department of Communication Sciences and Disorders in partnership with Neurofibromatosis California, this program will offer insights, resources, and an opportunity to build community and support.
Schedule of Events
9:45 AM – Registration in Folsom Hall Lobby
10:00 AM – Welcome
10:05 AM – Skin Issues
11:00 AM – Cognitive Communication
11:45 AM – Networking Lunch
12:45 PM – Genetics
1:30 PM – Audiology & Auditory Processing
2:15 PM – Communication Skills
3:00 PM – Closing Remarks
Meet the Speakers

Heather Thompson, PhD CCC-SLP – Speech-Language Pathologist Professor
Maija Kiuru, MD, PhD – Clinical Dermatology and Pathology Professor
Lisa D’Angelo, PhD CCC-SLP – Speech-Language Pathologist Associate Professor
Suma Shankar, MD – Medical Geneticist
Raymund Madayag, B.S – Audiology Doctoral Student

DATE: Saturday, August 30, 2025
LOCATION: California State University, Sacramento – Folsom Hall 7667 Folsom Blvd, Sacramento, CA 95819
Reserve Your Spot Today
Don’t miss this chance to learn, ask questions, and connect with your NF community. Register by August 26.
Register Now

Volunteers Needed
2025-06-30
In 2024, we proudly celebrated our 20-year anniversary, a testament to the unwavering dedication of our board members—four working moms, wives, and grandparents who have passionately volunteered for NF California throughout these two decades. Our journey has been one of profound connection and community building, illustrating that by working towards a common goal, we can create lasting relationships and support one another. We warmly invite you to join us in this fulfilling endeavor! Whether you have a specific skill, hobby, or passion you wish to share, we encourage you to reach out via email and let us know what inspires you. It’s through these diverse contributions that we enrich the NF California community and continue to make a meaningful impact together. Contact us: info@nfcalifornia.org | 707-469-0467

﻿Come be a part of something transformative!

Got Sneakers Fundraiser
2025-06-30
The “GotSneakers” fundraiser will last all year, and we would love for you to get involved. The program helps to reuse and recycle sneakers, in addition to raising awareness for Neurofibromatosis.

Participants gather unneeded tennis shoes from anyone and everyone they know. NF California then orders a prepaid shipping bag for participants to use to send the shoes to “Got Sneakers.” The proceeds are donated to NF California.

Contact us to get involved. NF California events@nfcalifornia.org or 707-761-0467

Footwear Guidelines

Request for BAGS

Rockin Hops Music Festival 2025
2025-05-17 11:00 - 20:30 UTC | Solano Brewing Co, 5500 Weber Road, Vacaville, CA, 95687, United States
Rockin’ HopsMusic Festival
Benefiting Neurofibromatosis California
May 17 & 18, 2025
Previous Year PhotosLife with NF StoriesPrintable Sponsor PacketNF1 Mini Symposium

Register NOW

What is Rockin Hops Music Festival?
May is Neurofibromatosis (NF) Awareness Month, and the NF community faces challenges in terms of healthcare equity, awareness, and quality of life. This rare genetic disorder affects people of all races, ethnic groups, and both sexes equally. Depending on where tumors grow on your nervous system, they can cause various symptoms such as blindness, deafness, cognitive issues, intense and crippling pain, visible tumors and even death if they turn malignant. NF affects one in every 2,500 to 3,000 births, making it one of the most common rare disorders that most people have never heard of.
The Rockin’ Hops music festival on May 17-18 is designed as a community event to raise awareness about Neurofibromatosis (NF) and support Neurofibromatosis California. Last year’s 2nd Annual Rockin’ Hops music festival was a success, so event planners are building on the concept. This year’s 3rd Annual Rockin’ Hops features a two-day music festival with nine bands performing, all donating their time to this worthy cause.
This is a family-friendly event, with no cover charge, allowing it to be accessible to all. Solano Brewing Company is making this event possible by being the presenting sponsor. We are thankful for our Stagehands: Alexion and Springworks and stage manager sponsors: Stems Florist, Live Music Center, Gordan’s Music and Sound, Davids’ Broken Note, Web Design by Brandon McCloskey, Photo Booth, Vill + Fields, Minor Change, Global Business and Arby Stow Guitars.
Many in the audience will be learning of NF for the first time at this event. In addition to vendor booths, there will be a Neurofibromatosis booth with educational materials to help those making donations understand the importance of their generosity.
Donations of time, raffle items, financial support, and participation are needed. Vendor tables are also still available. Those wishing to contribute should contact Debbie Bell at 707-761-4627.

Band Lineup:
Saturday, May 17, 202511:00am – 12:30pm Rockoustix1:00pm – 2:30pm Pub Kats3:00pm – 4:30pm The Lance Richards Band5:00pm – 6:30pm Gas Money7:00pm – 8:30pm The Last Call

Sat, May 1711:00am-12:30pmClassic Rock Blues & Pop
WebsiteFacebook

Sat, May 171:00pm -12:30pmClassic Rock Blues & Pop
WebsiteFacebook

Sat, May 173:00pm-4:30pmClassic Rock Blues & Pop
Instagram

Sat, May 175:00pm-6:30pmBlues & Rock

Facebook

Sat, May 177:00pm-8:30pmClassic Rock Blues& Pop Country
Facebook

Sunday, May 18, 2025
11:00am – 12:30pm Vixen Strut1:00pm – 2:30pm The Groovy Judy Band3:00pm – 4:30pm Desert Moon5:00pm – 6:30pm The Vinyl Countdown

Sun, May 1811:00am -12:30pmFunky Rock
waiting

Sun, May 181:00pm -2:30pmrock, classic rock, funk, and groove rock
Website

Sun, May 183:00pm -4:30pmCountry
Facebook

Sun, May 185:00pm -6:30pmPop, Soft Rock
Website

Food Truck LineupSaturday, May 17, 2025

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Brunch in a BoxSat. May 1711am – 6pm

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Taste of TuscanySat. May 1711am – 6pm

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Asian BurgerSat. May 174pm – 9pm

Sunday, May 18, 2025

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Cousins Maine LobsterSun. May 1811am – 7pm

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Brunch in a BoxSun. May 1811am – 6pm

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Shula’s KitchenSun. May 183pm – 7pm

Legend Sponsors:

Stagehand Sponsors:

Wanting to be a sponsor?
Printable Sponsorship Package

Legend$5,000
Beer Garden$1,100

Rockstar $3,000
Roadie$500

Stagehand $1,500
Groupie$70

Stage Manager$1,400
SpectatorSwag bag items

Pop Star$1,200

Back Stage Manager Sponsors:

Groupie Sponsors: Our participating vendors

Art by Diane B
May 17 & 18Oil and acrylic paintings/misc. woodworking items

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Tea Rose Embroidery
May 17 & 18Embroidered, Aprons, bath & kitchen towels, pet supplies, sport balls, hats, stuffies, aprons, cups

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Paparazzi
May 17Jewelry and accessories

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Angie’s Cozy Hand Knits
May 17 & 18Chunky Hand Knit Blankets, Plushies, snugglers,pet beds

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Alchemy5
Alchemy5May 17 & 18Intention-based products. room sprays, body oils, crystals, tarot reading

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Creations Unlimited
May 17 & 18Framed Art/Home Decor, Earrings, and more using Recycled Cans

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Scentsy
May 17 & 18Home fragrance, flameless alternaztive to candles, wax melts, scented Disney items, warmers, diffusers & oils, cleaning and laundry products, children items.

Joanie’s Crafts
May 17Canvas tote bags, purses, embroidered dish towels, makeup bags, plant picks, travel size pillow cases.

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Whimsical Art
May 17 & 18Moss Art, Jewlery & More!

Crafty Wine Chick
May 17Crafts, tumblers

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Damsel in Defense
May 17 & 18Personal safety items

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Miss Denise Toffee
Miss Denise’s Toffee has perfected the most mouthwatering, handcrafted English toffee recipe you’ll ever taste.

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Greentrees Glass
May 17 & 18My passion is bring smiles to others. Living my dream melting glass

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Wild n Chic
May 17 & 18Handmade, unique, porcupine, quilt, jewelry and accessories, including earrings, necklaces, bracelets, hat conchos

Custom Wood Turning
May 17Custom made wood products

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All Knotted UP
May 17 & 18Vanilla extract and paste, dehydrated sourdough starter, infusion kits, flower frogs, macrame plant hangers, upcycled pouches, hand dyed dish towels, beeswax wraps and bread bags

3D Printed Models
May 17We are offering high quality 3D printed Models and products for all ages! We have a variety of articulated dragons, sea creatures, dog breeds and all kinds of animals. We also have house hold 3d printed products such as Vases and planters.

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Pixie Pink Artistry
May 18Jewelry, art, resin home goods, sun catchers

Vix Jammin Creations
May 18Low sugar Spreadables, Biscotti, Handpainted wood Items

Carter’s Rings
May 17 & 18Jewelry

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Kiss My Licorice
May 17 & 18Licorice ropes and sour belts

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Danks Tree
May 17 & 18Climber to CarverTree Care to Tree Creations

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Cali Hat Haven
May 17 & 18Hat bar- we bring hats, beanies, bags and all the patches and accessories

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T Mobile
May 17 & 18Wireless service. Cell phones, tablets and smart watches. Home internet with unit. Hotpot‚Äôs and prepaid options. Phone cases, screen protectors and charging solutions. Premium audio, headphones and speakers.

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Photo Booth
May 17 & 18360’ & Digital Photo Booth

So Cute Succulents!
May 17 & 18Cute Pots ~ Oh So Cute Succulents!

VN Collectables
May 17 & 18I sew and crochet clothing and accessories such as sweaters and tops, jackets, skirts, headbands and scrungies; household items such as kitchen scarf towels, foot mops, countertop mats and afghans.

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Speaking of Skin
May 17 & 18
Natural herbal handmade skincare products – balms, oils, scrubs, lip balms, etc.

DCustom Barrel Design
May 17 & 18Handcrafted barrel chairs, fountains, ice chest, bar stools.

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John’s Custom 3D printing
May 17 & 18
3d Printed Toys and Fidgets

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Wild Side Rocks and Jewelry
May 18
Hand made beaded gemstone jewelry, rings, small mineral specimens and crystals

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Bamm Jammz - craft jammz
May 18
Exciting flavors craft jams

Raffle & Silent Auction Sponsors:

Where does the money go?:
Click image below to view.

QWhere does the money go?

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Summer Mini Series: Research & Resources
2025-05-17 08:00 - 20:30 (America/Los_Angeles) | Brewing Company Co, 5500 Weber Road, Vacaville, 95687, United States
Saturday, May 17, 2025
Brewing Company Co
5500 Weber Road
Vacaville CA 95687
The event is free, but RSVP is required.

All ages are welcome. We look forward to seeing you there!
If you have questions you can email: info@nfcalifornia.org | ph: 707-761-4627
Saturday at 9:30 AM to 11:00 am (check in will start at 9:00am)
Solano Brewing Company – Our amazing hosts for the Rockin’ Hops Music Festival (3 years running!)
We’ll kick off the day with a mini-session on NF research, featuring local doctors sharing the latest breakthroughs happening right here in California. This is a rare opportunity to learn directly from those involved in clinical studies—and get your questions answered.
Ask the Doctor: What You’ve Always Wanted to Know

Should I or my child participate in a research study?
What do PH1, PH2, and PH3 mean in clinical trials?
Do I have to travel to take part?

Get clarity. Get informed. Get involved.
Stick Around for Live Music!
After the session, stay a little longer and enjoy the first band of the day—let’s show Solano Brewing Company how much we appreciate their continued support.

Rising Adults (RAD) March 26, 2025
2025-03-26 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States
Navigating Life’s Transitions Together. We meet twice a month on Wednesdays in Dixon, CA

Did you have an IEP In School? Would you like to join our community? Rising Adults (RAD) is a community for special young adults aged 18-26 who are navigating the exciting and challenging journey of adulthood. Join us for discussions, workshops, and social events focused on personal growth, career development, and building meaningful connections with a biblical foundation.

Meeting topic: will be posted soon

For more details about RAD

If you want to reach us by phone or email you can call NF California or one of our co leaders:Co Leader – Greg Aton: greg@atons.org 707-631-3351Co Leader – Piedad Arias tinasyoy25@gmail.com 707-981-2234NF California – Debbie Bell dbell@nfcalifornia.org 707-469-0467

About us at Rising Adults, we believe in empowering each other through shared experiences. Whether you’re facing career challenges, relationship changes, or personal growth, we’re here to support you.

Printable Flyer

Rising Adults (RAD) March 12, 2025
2025-03-12 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Stanford NF1 Symposium "Ask the Doctors Meeting"
2025-03-08 10:00 - 14:00 UTC | Stanford University, 453 Quarry Road, Stanford, CA, 94304, United States
Empowering the NF Community ~ Through Knowledge and Support

We’re excited to invite you to the upcoming “Ask the Doctors” NF1 Symposium, an essential educational event designed to support patients, families, educators, and caregivers affected by Neurofibromatosis (NF).

This event, hosted by Stanford University, the Children’s Tumor Foundation, and Neurofibromatosis California, offers a unique opportunity to connect with leading experts in the field. Attendees will gain access to the latest information, valuable resources, and a supportive community dedicated to understanding and addressing the challenges of NF.

EVENT DETAILS:

📅 Date: Saturday, March 8, 2025

⏰ Time: 10:00 AM – 2:00 PM

📍 Location: Center for Academic Medicine, Grand Rounds Room Stanford University, 453 Quarry Road, Stanford, California

🎟️ Cost: Free event with lunch

FEATURED DOCTORS:

David Stevenson, M.D. Pediatrics, Medical Genetics

Kavita Sarin, M.D. Dermatology, Precision Medicine

Tamar Green, M.D. Child Psychology, Neurodevelopmental Disorders

Cynthia Campen, M.D. Pediatric Neurology, Neuro-Oncology

Featured Speakers:

Dr. Tamar Green – Understanding “Big Emotions” & Irritability in Children with RASopathies
Dr. Kavita Yang Sarin – Topical MEK Inhibitor Gel for Treating Cutaneous Neurofibromas

Ask the Doctors Panel:

Dr. Thomas Wilson, Neurosurgery, Inaugural awardee of Project Dream
Dr. Jacinda Sampson, Neurology
Dr. David Stevenson, Pediatrics & Medical Genetics
Dr. Cynthia Campen, Child Neurology
Dr. Stephanie Roses, Neurology
Dr. Tamar Green, Psychiatry & Behavioral Sciences

Please Note: All ages are welcome. No childcare available. We look forward to seeing you there!

Parking Information: more details to come

Don’t miss this chance to ask questions, learn from experts, and connect with others in the NF community.

REGISTER NOW

Printable Flyer Agenda

Rising Adults (RAD) February 26, 2025
2025-02-26 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Rising Adults (RAD) February 12, 2025
2025-02-12 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Year-End Giving
2025-01-31
As we approach the end of the year, many of us are reflecting on the importance of giving to the causes that resonate deeply within our hearts. This is a time of generosity and hope, and we invite you to join us in making a significant impact as we strive to finish this year strong and enter 2025 with renewed purpose.

Your support is crucial in helping us elevate the lives of those affected by Neurofibromatosis, allowing us to continue our vital work in research, education, and advocacy. Together, we can create a brighter future for individuals and families living with NF, fostering a sense of community and belonging that empowers personal growth and resilience. Let’s unite in our commitment to making a difference, ensuring that our collective efforts lead to meaningful advancements for this deserving community.

Donate Now

Rising Adults (RAD) January 29, 2025
2025-01-29 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Rising Adults (RAD) January 15, 2025
2025-01-15 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Rising Adults (RAD) December 18,2024
2024-12-18 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States

Tamale Making Party
2024-12-14 12:00 - 16:00 UTC
Please join us for a fun Holiday Tamale Making Party and Mini Boutique in Huntington Beach, designed to make and take your own tamales. Elizabeth Escobar, who lives with NF1, will share her family traditions and guide us through the process of assembling and steaming beef, chicken and vegetarian tamales. If all goes well, we may have a table set up for our guests to have tamales and hot chocolate on the patio afterwards. Suggested donation $2.00 per tamale.

We will also have a mini gift boutique of holiday wreaths and table centerpieces, and some handcrafted glass, leather, and textiles made and donated by our volunteers. There will also be a few commercially produced items that have been donated for fundraising purposes. 100% of the proceeds of the boutique will go toward future NF California events and/or directly to crafters who have NF.

Drop by any time between 12:00pm to 4pm.

To help us plan for the event please RSVP. If something comes up and you’re not able to attend please send us a message. Those who RSVP will be sent the address.

If you have questions please contact katie.sperring@nfcalifornia.org; or call Katie Sperring at (714) 293-4035.

Rising Adults (RAD) December 4,2024
2024-12-04 18:00 - 20:00 UTC | Sutter Medical Plaza Dixon, 125 N Lincoln St, Dixon, CA, 95620, United States
