Takeover Tuesday – Highlight!
Did you miss Yasmine’s awesome takeover this past Tuesday? No worries! We’ve saved her takeover in the highlights on NOAH’s Instagram profile.
Check it out at: www.instagram.com/noahalbinism
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
LatinX & Hispanic Heritage Month!
NOAH Community member, Kathi Garza, shares some of her experiences growing up in a Mexican American family, and how she stays connected to her cultural identity now.
Check it out at www.albinism.org/heritage
Hispanic & LatinX PWAs – how do you stay connected to your heritage or honor your culture? Send a story, photo, or video to eaubrey@albinism.org to be featured on the NOAH Website and social media during LatinX & Hispanic Heritage Month and beyond.
Published: September 19, 2022
Calling All Parents with Albinism!
Huddle up with your fellow Parents without Pigment on Tuesday, September 27th at 9pm ET // 6pm PT as we chat about kids in sports. We’ll cover topics from getting the right equipment to getting to the game, and of course, we’ll chat about actually seeing your kiddo in action!. Bring your wisdom and questions to help us kick off another exciting NOAH Connection!
New to the group?
Join now for the link to this call, and you’ll get the invite future calls too!
www.albinism.org/NOAH-Connections/#pwp
Published: September 19, 2022
Celebrate NOAH’s 40th Birthday at NOAH Night!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
One Week Left to Submit Your Talent!
Celebrate NOAH’s 40th birthday with a showcase of talent!
We know you have the skills, join us to inspire others.
Submit a video demonstrating your abilities by Monday, September 26th for an opportunity to take part in our NOAH Night Talent Show on October 15th.
Submit your talent today!
www.albinism.org/NOAHNight/#talent
Published: September 19, 2022
NOAH Night Tickets Now Available!!
NOAH Night is just around the corner, and we can’t wait to celebrate the albinism community with our hosts Marleena Barber & Casey Greer (and special guest Rupert!).
Get YOUR tickets today: www.albinism.org/NOAHNight
albinism.org/NOAHNight/#sponsor
Published: September 19, 2022
- Colleagues at the University of Iowa Hospitals & Clinics and the National Advanced Driving Simulator are looking for volunteers who are required to wear a bioptic telescope while driving to participate in a research study.
For more information, visit: www.albinism.org/research/#u-iowa - NOAH community member, Marleena Barber, is having a free performance of her one-woman cabaret show, Thank You For the Music, Saturday, October 1st at 2pm. The performance and talk with the artist will be held at Positive Exposure 109 in NYC.
For more details or to RSVP: http://albinism.org/wp-content/uploads/2022/09/Thank-you-for-the-music-Poster.pdf
NOAH Events This Week!
Tuesday: Aging with Albinism
September 20th at 5:00pm ET // 3:00pm PT
Join June Waugh and friends for our next session of NOAH Connections: Aging with Albinism tomorrow, Tuesday, September 20th at 5pm ET // 2pm PT.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#aging
Published: September 19, 2022
Tuesday: NOAH Research Program Coffee Chat
September 20th at 8:00pm ET // 5:00pm PT
Join NOAH Executive Director, Karen Bly and the NOAH Research Program Committee, for a special NOAH Connections Coffee Chat about the NOAH Research Program on Tuesday, September 20th at 8pm ET // 5pm PT.
www.albinism.org/NOAH-Connections/#coffee
Published: September 19, 2022
Wednesday: Young Adult Connections
September 21st at 9:00pm ET // 6:00pm PT
Young adults, you’re invited to our next session of NOAH Connections just for you this Wednesday, September 21st at 9pm ET // 6pm PT.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#young-adults
Published: September 19, 2022
Thursday: Adult Connections
September 22nd at 9:00pm ET // 6:00pm PT
Adults, get ready for your next chance to chat and connect with your PWA pals!
We can’t wait to “see” YOU this Thursday at 9pm ET // 6pm PT!
www.albinism.org/NOAH-Connections/#adults
Published: September 19, 2022
Sunday: PWAs in STEM Connections
September 25th at 5:00pm ET // 2:00pm PT
Calling All PWAs in STEM!
Join Sarah Kane & Derek Schindelman for social time with fellow PWAs in the STEM Fields, Sunday, September 25th at 5pm ET // 2pm PT. We can’t wait to see you there!
www.albinism.org/NOAH-Connections/#STEM
Published: September 19, 2022
Sunday: LGBTQ+ and Allies Connections
September 25th at 8:00pm ET // 5:00pm PT
LGBTQ+ PWAs and allies – join us on Sunday, September 25th at 8pm ET // 5pm PT for our next session of NOAH Connections just for you.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#lgbtq
Published: September 19, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: September 19, 2022
| Monday, September 27th: NOAH Workshops: Parents & Caregivers | Thursday, September 29th: NOAH Connections: Teens |
Monday, October 3rd: NOAH Workshops: Parents & Caregivers | Wednesday, October 5th: NOAH Connections: Young Adults |
| Thursday, October 6th: NOAH Connections: Adults | Thursday, October 13th: NOAH Connections: Teens |
| Wednesday, October 19th: NOAH Connections: Young Adults | Thursday, October 20th: NOAH Connections: Adults |
Takeover Tuesday – TOMORROW!
We’re so excited that Yasmine will be taking over our social media TOMORROW! Don’t miss out – make sure you’re following NOAH on Facebook & Instagram to catch a day in Yasmine’s life as a college student with albinism.
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
LatinX & Hispanic Heritage Month!
Calling All LatinX & Hispanic PWAs!
LatinX & Hispanic Heritage Month is just around the corner, and we want to hear from YOU.
How do you stay connected to your heritage or honor your culture? Send a story, photo, or video to eaubrey@albinism.org to be featured on the NOAH Website and social media during LatinX & Hispanic Heritage Month and beyond.
Published: September 12, 2022
You’re Invited to a NOAH Research Program Coffee Chat!
Join NOAH Executive Director, Karen Bly and the NOAH Research Program Committee, for a special NOAH Connections Coffee Chat about the NOAH Research Program on Tuesday, September 20th at 8pm ET // 5pm PT.
www.albinism.org/NOAH-Connections/#coffee
Published: September 12, 2022
Celebrate NOAH’s 40th Birthday at NOAH Night!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
NOAH Night Tickets Now Available!!
NOAH Night is just around the corner, and we can’t wait to celebrate the albinism community with our hosts Marleena Barber & Casey Greer (and special guest Rupert!).
Get YOUR tickets today: www.albinism.org/NOAHNight
Published: September 12, 2022
Help Us Spread the Word!
Exciting NOAH Night Sponsorship opportunities are available, and we need your help finding sponsors!
Do you know someone who would be eager to celebrate NOAH’s 40th birthday and support the albinism community? Make sure they don’t miss out!
albinism.org/NOAHNight/#sponsor
Published: September 12, 2022
Announcing, Spiffy’s Art Contest!
In honor of NOAH’s 40th birthday, Spiffy is having an Art Contest open to kids & teens with albinism. Artists can submit a Spiffy Coloring Page, or freestyle artwork.
Contest winners will be announced at the NOAH Night celebration, and featured in a future issue of Albinism InSight!
Learn more and submit YOUR artwork by October 1st:
www.albinism.org/NOAHNight/#art-contest
Published: September 12, 2022
Talent Search!
Calling all PWAs! Do you have a noteworthy talent that makes YOU uniquely you? Share your skills in our talent showcase, NOAH Has Talent!, during our NOAH Night celebration on October 15th.
Learn more & submit YOUR talent by September 26th: www.albinism.org/NOAHNight/#talent
Published: September 12, 2022
Calling All White Cane Users!
In addition to being NOAH’s 40th Birthday & our NOAH Night Celebration, October 15th is also White Cane Day! In honor of this occasion, we are compiling photos and videos of white cane users in our community to be shared as part of a special feature at NOAH Night!
If you’d like the chance to be included in this special feature, upload your photos or videos to our White Cane Day album by October 1st: https://bit.ly/3DjlIJt
Published: September 12, 2022
NOAH Events This Week!
TONIGHT: Grandparent Connections
September 12th at 8:00pm ET // 5:00pm PT
Calling all grandparents!
Join Sherry Dinner & Rick Hrach for an open forum discussion just for grandparents TONIGHT at 8:00pm ET // 5:00pm PT!
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#grandparents
Published: September 12, 2022
Tuesday: Supporting the Psychosocial Well-Being of Children and Youth with Albinism
September 13th at 9:00pm ET // 6:00pm PT
Parents, caregivers, educators, clinicians, and others – join Jocelyn Leworthy this Tuesday, September 13th at 9pm ET // 6pm PT to learn about ways to support the psychosocial well-being of children & youth with albinism. This session will offer an overview of psychosocial development, as well as interactive activities and discussion.
Register today!
www.albinism.org/NOAH-Connections/#psychosocial
Published: September 12, 2022
Thursday: Teen Connections
September 15th at 8:00pm ET // 5:00pm PT
Teens, get ready to kick off September with our next session of NOAH Connections just for you!
We can’t wait to see YOU this Thursday at 8pm ET // 5pm PT!
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#teens
Published: September 12, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: September 12, 2022
| Tuesday, September 20th: NOAH Connections: NOAH Research Program Coffee Chat | Wednesday, September 21st: NOAH Connections: Young Adults |
| Thursday, September 22nd: NOAH Connections: Adults | Sunday, September 25th: NOAH Connections: PWAs in STEM NOAH Connections: LGBTQ+ and Allies |
| Monday, September 27th: NOAH Workshops: Parents & Caregivers | Thursday, September 29th: NOAH Connections: Teens |
Monday, October 3rd: NOAH Workshops: Parents & Caregivers |
Talent Search!
Calling all PWAs! Do you have a noteworthy talent that makes YOU uniquely you? Share your skills in our talent showcase, NOAH Has Talent!, during our NOAH Night celebration on October 15th.
Learn more & submit YOUR talent by September 26th: www.albinism.org/NOAHNight/#talent
#TakeoverTuesday
We are so excited to share that Yasmine Straker will be kicking off our social media takeover series on Tuesday, September 13th…which just so happens to be her birthday!
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
Published: August 29, 2022
New Date – Workshop Rescheduled!
Parents & Caregivers – join Sheila Adamo on Tuesday, September 27th to become part of a community that will share and learn about adapting to your new albinism journey.
Register by September 25th to secure your spot!
www.albinism.org/workshops
Published: August 29, 2022
Back to School!
It’s that time of the year again…and we know many of our community members are back to school already. So, if you’re back in class (educators too!), show us your best back to school pics on our recent Facebook Post!
Published: August 29, 2022
Mark Your Calendar!
Parents & Caregivers – join Sheila Adamo on Thursday, September 15th to become part of a community that will share and learn about adapting to your new albinism journey.
Register by September 13th to secure your spot!
www.albinism.org/workshops
Published: August 29, 2022
- NOAH community members Casey & Cassandra host the Rare with Flair podcast, and they recently released a NOAHCon recap episode. Check it out! https://rarewithflair.com/noahcon22/
- Have you seen this article about NOAH community member, Rebecca Rosenberg? Rebecca founded ReBokeh, an app which increases accessibility for those with moderate visual impairment.https://ventures.jhu.edu/news/student-founders-disabilities/
NOAH Events This Week!
Tuesday: Parenting without Pigment
August 30th at 9:00pm ET // 6:00pm PT
Calling all parents without pigment!!
Join Marleena Barber on Tuesday at 9pm ET // 6pm PT to discuss the support systems we have as parents with albinism.
New to the group? Now’s the perfect time to join!
www.albinism.org/NOAH-Connections/#pwp
Published: August 29, 2022
Thursday: Teen Connections
September 1st at 8:00pm ET // 5:00pm PT
Teens, get ready to kick off September with our next session of NOAH Connections just for you!
We can’t wait to see YOU this Thursday at 8pm ET // 5pm PT!
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#teens
Published: August 29, 2022
Thursday: Life Hacks with Cassandra & Liz
September 1st at 9:00pm ET // 6:00pm PT
If you missed the popular Life Hacks session at NOAHCon2022, or you’d like to experience it again, sign up for the encore presentation of this crowd-favorite session today!
Liz Schafer and Cassandra Mendez will be sharing their best tips and tricks for life as a PWA on Thursday at 9pm ET // 6pm PT.
Sign up now!
www.albinism.org/NOAH-Connections/#life-hacks
Published: August 29, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: August 29, 2022
| Wednesday, September 7th: NOAH Connections: Young Adults | Thursday, September 8th: NOAH Connections: Adults |
| Monday, September 12th: NOAH Connections: Grandparents | Tuesday, September 13th: NOAH Connections: Supporting the Psychosocial Well-Being of Children and Youth with Albinism |
| Thursday, September 15th: NOAH Connections: Teens NOAH Workshops: Parents & Caregivers | Wednesday, September 21st: NOAH Connections: Young Adults |
| Thursday, September 22nd: NOAH Connections: Adults | Monday, September 27th: NOAH Workshops: Parents & Caregivers |
Congratulations, Christionna!
Join us in congratulating 2022 Space Camp Scholarship winner, Christionna S.! We look forward to hearing about your SCIVIS experience this fall.
NOAH Night Planning Committee
The planning for NOAH Night is already underway, but there’s still time for YOU to help!
PWAs & family members, share your ideas on the NOAH Night Planning Committee leading up to the big event on NOAH’s 40th birthday, October 15th!
For more details: http://albinism.org/wp-content/uploads/2022/08/NOAH-Night-Committee.pdf
Interested in joining? Send us a message at info@albinism.org
Published: August 22, 2022
Calling all Parents without Pigment!!
Join Marleena Barber on Tuesday, August 30th at 9pm ET // 6pm PT to discuss the support systems we have as parents with albinism.
New to the group? Now’s the perfect time to join!
www.albinism.org/NOAH-Connections/#pwp
Published: August 22, 2022
Life Hacks with Cassandra & Liz!
If you missed the popular Life Hacks session at NOAHCon2022, or you’d like to experience it again, sign up for the encore presentation of this crowd-favorite session today!
Liz Schafer and Cassandra Mendez will be sharing their best tips and tricks for life as a PWA on Thursday, September 1st at 9pm ET // 6pm PT.
Sign up now!
www.albinism.org/NOAH-Connections/#life-hacks
Published: August 22, 2022
Mark Your Calendar!
Parents & Caregivers – join Sheila Adamo on Thursday, September 15th to become part of a community that will share and learn about adapting to your new albinism journey.
Register by September 13th to secure your spot!
www.albinism.org/workshops
Published: August 22, 2022
- Parents of kids with albinism middle/high school, or transitioning to college – check out the Lighthouse Guild’s upcoming Tele-Support Group – Adapting as our Children Grow. The next session will be held September 22nd at 8:30pm ET // 5:30pm PT.More details: http://albinism.org/wp-content/uploads/2022/08/email-lighthouse-2nd.pdf
NOAH Events This Week!
Wednesday: Young Adult Connections
August 24th at 9:00pm ET // 6:00pm PT
Calling all young adults with albinism!
Don’t miss out on your next chance to connect with fellow PWAs – join us this Wednesday at 9pm ET // 6pm PT!
www.albinism.org/NOAH-Connections/#young-adults
Published: August 22, 2022
Thursday: Adult Connections
August 25th at 9:00pm ET // 6:00pm PT
Adults with albinism – we can’t wait to see you Thursday!
Join us on Zoom this Thursday at 9pm ET // 6pm PT to connect and chat with PWA pals old and new!
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#adults
Published: August 22, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: August 22, 2022
| Tuesday, August 30th: NOAH Connections: Parenting without Pigment | Thursday, September 1st: NOAH Connections: Teens NOAH Connections: Life Hacks with Liz & Cassandra |
| Wednesday, September 7th: NOAH Connections: Young Adults | Thursday, September 8th: NOAH Connections: Adults |
| Tuesday, September 13th: NOAH Connections: Supporting the Psychosocial Well-Being of Children and Youth with Albinism | Thursday, September 15th: NOAH Connections: Teens NOAH Workshops: Parents & Caregivers |
| Wednesday, September 21st: NOAH Connections: Young Adults | Thursday, September 22nd: NOAH Connections: Adults |
National Eye Exam Month
August is National Eye Exam Month, so we’re thinking of the awesome optometrists & ophthalmologists that help care for the eyes of PWAs everywhere.
Do you have an awesome eye doctor? Shout them out on our recent Facebook post!
Congratulations, Prize Winners!
Join us in congratulating Alicia C., Hollie W., and Benjamin F., who are the winners of Spiffy’s Scavenger Hunt prize drawing at NOAHCon22! Each prize winner will receive a voucher for $50 off registration for a future NOAH event.
Thank you to everyone who played Spiffy’s Scavenger Hunt at the NOAH conference!
Published: August 15, 2022
NOAH Helps Grandparents Connect!
In addition to providing social and educational sessions and workshops for grandparents, NOAH also helps put grandparents in touch with others who truly understand the journey of grandparenting a child with albinism.
Encourage your grandparents to send a message to grandparents@albinism.org to be connected with fellow grandparents in the NOAH community.
Published: August 15, 2022
It’s Easy to Create a Facebook Fundraiser for NOAH!
Starting a fundraiser takes just minutes, and the money raised helps us continue to provide programs and services to the community!
Follow the graphic to set up a fundraiser for NOAH today at:
facebook.com/fund/NOAH.Albinism/
Published: August 15, 2022
- Have you seen the new GapKids commercial? This recent ad highlights the interests and talents of many kids, including a drummer with albinism!Check it out: https://www.youtube.com/watch?v=fYolts75D20
- Dr. Niya Pickett Miller (parent of a PWA, longtime NOAH volunteer and NOAHCon 2022 Keynote Address Speaker) is using research to illuminate albinism identity and communication, and she needs your help! If you would be willing to share your authentic story as a PWA or someone connected to albinism, please complete Dr. Pickett Miller’s brief survey at:
https://docs.google.com/forms/d/1EsM65n5XcV9lTmVBlLB-RIH5Lk9onf_Dn38kaqu5QZA/viewform?edit_requested=true - Did you know that the US government recently expanded the availability of COVID test options for people who are blind or visually-impaired? Now, blind and low-vision users have the option to order Ellume COVID home tests, which provide audio instructions and test results through a smartphone app. For more info, visit: https://acl.gov/covid19/tests-people-who-are-blind-or-have-low-visionIf you would like to order tests, call 1-800-232-0233
NOAH Events This Week!
TODAY: Albinism and the Family Workshop
August 15th at 8:30pm ET // 5:30pm PT
Registered attendees – join Sheila Adamo tonight to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
To learn more about upcoming NOAH workshops, visit:
www.albinism.org/workshops
Published: August 15, 2022
Thursday: Teen Connections
August 18th at 8:00pm ET // 5:00pm PT
Teens, you’re up next!
Join us this Thursday at 8pm ET // 5pm PT to discuss mobility and navigating our surroundings!
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#teens
Published: August 15, 2022
Saturday: PWAs in STEM
August 20th at 5:00pm ET // 2:00pm PT
Calling All PWAs in STEM!
Join Sarah Kane & Derek Schindelman for social time with fellow PWAs in the STEM Fields, Saturday, August 20th at 5pm ET // 2pm PT. We can’t wait to see you there!
www.albinism.org/NOAH-Connections/#STEM
Published: August 15, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: August 15, 2022
| Wednesday, August 24th: NOAH Connections: Young Adults | Thursday, August 25th: NOAH Connections: Adults |
| Thursday, September 1st: NOAH Connections: Teens | Wednesday, September 7th: NOAH Connections: Young Adults |
| Thursday, September 8th: NOAH Connections: Adults |
NOAH’s Back to School Library
Parents & caregivers – we want to hear from YOU!
How do you/your child share info about albinism with their teachers or classmates at the beginning of the school year? Do you/they write a letter, make a presentation, or go a different route?
Submit your sample letters, presentations, ideas, etc. (including your child’s age/grade, and photos/videos if applicable!) to bts@albinism.org for the chance to be added to our Back to School Library!
Published: August 8, 2022
Low Vision Driving Workshop Recording Now Available for Purchase!
Missed the LV Driving Workshop at NOAHCon22? No worries! The recording of this jam-packed day-long workshop is now available at the NOAH Online Store.
Purchase the recording today to check out sessions addressing the clinical low vision exam, bioptic telescopes, pre-driver readiness; behind-the-wheel training and testing; transportation as a non-driver; gaining control of transportation needs; how a bioptic driving bill becomes law, and more!
https://app.donorview.com/GnR0
Published: August 8, 2022
Register Today!
Parents, Grandparents, & Caregivers of children with albinism – join Sheila Adamo on Monday, August 15th to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
Register by August 13th to secure your spot!
www.albinism.org/workshops
Published: August 8, 2022
#TakeoverTuesday
We’re very excited to start a new segment on NOAH Social media, featuring the day in the life of a PWA for #TakeoverTuesday…
But, before we get started, we want to hear from YOU! What would you like to see for #TakeoverTuesday?
Let us know on our recent Facebook Post!
Published: August 8, 2022
Spiffy Shout-Out!
Your favorite fundraising friend, Spiffy, has a special shout-out for the Kelly Family, who hosted a fundraising event and raised over $12,000 for NOAH! Way to go!!
Check out the options and create
YOUR fundraising page today:
www.albinism.org/fundraisers
Published: August 8, 2022
- Jasmine is a Star, a film following the journey of a determined 16-year-old girl with albinism, premiered last week at the BlackStar Film Festival! For more info about Jasmine is a Star and the BlackStar Film Festival, visit: https://www.blackstarfest.org/festival/events/jasmine-is-a-star-2/
- Did you know that our friends at the HPS Network offer monthly support calls for people with HPS and their families? Check out their upcoming programming at https://www.hpsnetwork.org/member-connect-calls/ For more info, contact the HPS Network at info@hpsnetwork.org
NOAH Events This Week!
TODAY: NOAHCon Recap Panel
August 8th at 9:00pm ET // 6:00pm PT
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel TONIGHT at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
All are welcome, so register now!
www.albinism.org/NOAH-Connections/#noahcon
Published: August 8, 2022
Wednesday: Young Adult Connections
August 10th at 9:00pm ET // 6:00pm PT
Young adults, let’s chat about dating!
Join us this Wednesday at 9pm ET // 6pm PT to discuss how we navigate the dating world as young adults with albinism!
www.albinism.org/NOAH-Connections/#young-adults
Published: August 8, 2022
TODAY: NOAHCon Recap Panel
August 8th at 9:00pm ET // 6:00pm PT
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel TONIGHT at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
All are welcome, so register now!
www.albinism.org/NOAH-Connections/#noahcon
Published: August 8, 2022
Sunday: LBGTQ+ & Allies Connections
August 14th at 8:00pm ET // 5:00pm PT
LGBTQ+ & Allies, you’re up next!
Join us this Sunday, August 14th at 8pm ET // 5pm PT for our next session of NOAH Connections just for you!
New to the group? Sign up now for the invite to this call & we’ll send you email reminders for future opportunities to connect!
www.albinism.org/NOAH-Connections/#lgbtq
Published: August 8, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: August 8, 2022
| Monday, August 15th: NOAH Workshops: Albinism and the Family | Thursday, August 18th: NOAH Connections: Teens |
| Saturday, August 20th: NOAH Connections: PWAs in STEM | Wednesday, August 24th: NOAH Connections: Young Adults |
| Thursday, August 25th: NOAH Connections: Adults | Thursday, September 1st: NOAH Connections: Teens |
| Wednesday, September 7th: NOAH Connections: Young Adults | Thursday, September 8th: NOAH Connections: Adults |
NOAHCon Recap Session!
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel August 8th at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
All are welcome, so register today!
www.albinism.org/NOAH-Connections/#noahcon
Published: August 1, 2022
How I See!
Whether you are a non-PWA looking to better understand a PWA’s vision, or a PWA interested in indulging in a conversation about how you see and the ways you communicate your vision to others, Elizabeth Schafer’s “How I See” is perfect for you!
This encore presentation of our NOAHCon22 session will include a series of paintings created by a PWA, an interactive activity, and a Q&A/discussion.
We hope you’ll join us on August 9th at 8pm ET // 5pm PT!
Sign up today: www.albinism.org/NOAH-Connections/#see
Published: August 1, 2022
Registration is Now Open!
Parents, Grandparents, & Caregivers of children with albinism – join Sheila Adamo on Monday, August 15th to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
Register by August 13th to secure your spot!
www.albinism.org/workshops
Published: August 1, 2022
International Day of Friendship!
Last Friday was the International Day of Friendship, so we celebrated the many friendships in the NOAH Community by sharing shout-outs to NOAH friends!
Give a shout-out to one of your NOAH friends (pics encouraged!) on our recent Facebook post!
Published: August 1, 2022
- Did you know that last Tuesday was the 32nd anniversary of the Americans with Disabilities Act (ADA)? NOAH is proud to support this important civil rights law that works to ensure all people with disabilities have the same rights and opportunities as everyone else.
To learn more, visit: www.adaanniversary.org/ - Did You Know?! The Global Albinism Alliance recently announced the 2022 International Scientific Conference on Albinism – ISCA 2022, which will be held online November 16-19, 2022. Check out their recent post for more details! https://bit.ly/3zQiRpz
- Join us in congratulating former UN independent expert on albinism, I.K. Ero, who was recently awarded an honorary Doctor of Laws degreefrom Lancaster University! https://bit.ly/3JjTJul
- The United Nations Independent Expert on Albinism (UN IE), Muluka-Anne Miti-Drummond, is preparing a report for the next session of the UN General Assembly on people with albinism on the move. In support of this effort, the Global Albinism Alliance is conducting a survey to help gather information. If you have ever moved within your country for any reason(s) directly related to you or a family member’s albinism, the GAA encourages you to complete their Albinism and Moving Survey. https://bit.ly/3BBKBiO
NOAH Events This Week!
Thursday: Teen Connections
August 4th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday at 8pm ET // 5pm PT for our next session of NOAH Connections just for you!
www.albinism.org/NOAH-Connections/#teens
Published: August 1, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: August 1, 2022
| Monday, August 8th: NOAH Connections: NOAH Conference Recap Panel | Tuesday, August 9th: NOAH Connections: How I See with Elizabeth Schafer |
| Wednesday, August 10th: NOAH Connections: Young Adults | Thursday, August 11th: NOAH Connections: Adults |
| Monday, August 15th: NOAH Workshops: Albinism and the Family | Thursday, August 18th: NOAH Connections: Teens |
| Saturday, August 20th: NOAH Connections: PWAs in STEM | Wednesday, August 24th: NOAH Connections: Young Adults |
| Thursday, August 25th: NOAH Connections: Adults |
Did You Know?
One year ago Tuesday was Executive Director Karen Bly’s very first day working with NOAH!
Thank you, Karen, for your dedication and leadership in the past year. We can’t wait to see what year 2 brings!
Published: July 25, 2022
In-Person Events – Save the Date!
This one time at NOAH Camp…
Calling all campers with albinism and their families! Mark your calendars for our next NOAH Family Summer Camp, July 14-19, 2023.
We hope you’ll join us for slip n’ slides, s’mores, and lots of laughs with your NOAH friends!
Published: July 25, 2022
See You in the Twin Cities!
Adult PWAs, mark your calendars for our next Adults with Albinism Weekend, September 29 – October 1, 2023 in Minneapolis, MN!
Are you planning to join in on the fun? We hope so!
Published: July 25, 2022
See You in Orange County!
NOAHCon 2022 just ended, but we’re already looking forward to our next conference! Mark your calendars and get ready to join us in Orange County, California July 11-14, 2024!
Published: July 25, 2022
- Remember Cat in the Hat and Gertrude McFuzz? These precious pups with albinism have officially arrived at their forever homes! Check out this recent video from Red Desert Doodles sharing their journey to meet their new owners: https://www.facebook.com/watch/?v=457678289510655&ref=sharing
- Check out these photos of NOAH community members, Aiden & Nate M., who recently competed in the The Windy City Blind Hockey Showdown! https://bit.ly/3vf0EiK
NOAH Events This Week!
Wednesday: Young Adult Connections
July 27th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! We hope you’ll join us this Wednesday at 9:00pm ET // 6:00pm PT to connect and chat with your PWA pals!
New to the group? Sign up today!
www.albinism.org/NOAH-Connections/#young-adults
Published: July 25, 2022
Thursday: Adult Connections
July 28th at 9:00pm ET // 6:00pm PT
Adult PWAs, we can’t wait to “see” you! Join us this Thursday at 9pm ET // 6pm PT to re-connect with old friends, and make some new ones!
www.albinism.org/NOAH-Connections/#adults
Published: July 25, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: July 25, 2022
| Thursday, August 4th: NOAH Connections: Teens | Wednesday, August 10th: NOAH Connections: Young Adults |
| Thursday, August 11th: NOAH Connections: Adults | Thursday, August 18th: NOAH Connections: Teens |
Thank YOU for Joining Us at NOAHCon!
Looking back at this weekend’s conference, we want to thank all of our awesome attendees who joined us for education, connection, and camaraderie in our first in-person conference in four years. As you think back on this jam-packed weekend, share a favorite memory (or two!) that made your conference experience memorable on our recent Facebook post.
Published: July 18, 2022
Thank You, Special Guests!
Join us in sending a special shout-out to our 6 special guests who shared their conference experience on NOAH’s social media this weekend.
Thank you Courtney, Gabriella, Sarah, Casey, Yasmine, and Jessica for taking time out of your day at NOAHCon to share your perspective and experience with our community!
Published: July 18, 2022
We Want YOU For Albinism InSight!
Submitting an article to Albinism InSight is a great way for you to share your knowledge and experience with the albinism community! Submissions are due this Wednesday, July 20th.
For more information, visit: www.albinism.org/AI/call-for-content
Published: July 18, 2022
Tell Your Teachers!
NOAH Ed U is a complimentary supplement of Albinism InSight geared specifically towards educators, and the Summer 2022 Issue is now available. Tell all of the teachers in your life to check it out today!
Published: July 18, 2022
- Check out this video feature on NOAH Community member, Elizabeth Schafer, and her work with Splashes of Hope, creating art installations at children’s hospitals! https://www.youtube.com/watch?v=0AWCXt761ho
NOAH Events This Week!
Thursday: Teen Connections
July 21st at 8:00pm ET // 5:00pm PT
Teens, get ready for our next session of NOAH Connections just for you! Join us this Thursday at 8pm ET // 5pm PT to connect and chat with fellow teens with albinism.
www.albinism.org/NOAH-Connections/#teens
Published: July 18, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: July 18, 2022
| Wednesday, July 27th: NOAH Connections: Young Adults | Thursday, July 28th: NOAH Connections: Adults |
Spiffy Made it to Orlando!
Thanks to our many awesome fundraisers, Spiffy finally made it to Orlando, and he can’t wait to meet you at NOAHCon 2022!
Check out his recent video update.
Published: July 11, 2022
Thank You, NOAHCon Sponsors!
Join us in sending a special shout-out to our NOAHCon 2022 Sponsors:
Epstein | Ostrove
Under the Same Sun
iYellow Group
Encore
Published: July 11, 2022
Conference Attendees – Check Your Inbox!
The NOAHCon 2022 conference schedule & more were sent via email on Friday! If this info-packed message didn’t reach you, send us a message at info@albinism.org.
Published: July 11, 2022
Amazon Prime Day!
Amazon Prime Day is this week, July 12-13th, and this is the perfect chance to snag some great deals while shopping for a good cause.
Designate NOAH as your charity today & we’ll receive 0.5% of all of your purchases through AmazonSmile on Prime Day and everyday!
smile.amazon.com/ch/23-2265173
Published: July 11, 2022
Thank YOU for Shopping for NOAH!
Shoutout to our AmazonSmile shoppers, whose purchases raised over $700 for NOAH from January-March 2022!
When you shop on AmazonSmile, 0.5% of every purchase goes to NOAH.
Start shopping for NOAH today: smile.amazon.com/ch/23-2265173
Published: July 11, 2022
NOAH Events This Week!
Thursday – Sunday: NOAHCon 2022!
July 14-17th
We can’t wait to see YOU in Orlando!
Published: July 11, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: July 11, 2022
| Thursday, July 21st: NOAH Connections: Teens | Wednesday, July 27th: NOAH Connections: Young Adults |
| Thursday, July 28th: NOAH Connections: Adults |
So Close!
Thanks to our many awesome fundraisers who have started their Adopt-a-Day calendars or planned events, Spiffy is getting closer to Orlando every day!
Can YOU help Spiffy make it to FL in time for NOAHCon 2022??
Create your fundraising page today:
www.albinism.org/fundraisers
Published: June 27, 2022
Limited NOAHCon Volunteer Opportunities Still Available!
We have an amazing two days of fun planned for our youngest conference attendees, but we need YOU to help make it happen!
Help make the conference extra special for NOAH Kids and earn a registration fee rebate. Learn more & sign up to volunteer today at:
albinism.org/NOAHCon/volunteer
Published: June 27, 2022
Calling all PWA writers!
THREE spots available for a free manuscript evaluation in advance of the 2022 NOAH Conference.
What: Submit 10-20 pages of your manuscript-in-progress of any genre and receive FREE written feedback followed by a 30-minute meeting at the NOAH conference in Orlando or via Zoom at a mutually decided time.
Who: My name is Emily Urquhart and I am a freelance journalist, writer, editor, and educator. I’ve published two works of nonfiction and a collection of essays that will be out this fall. I’m also the parent of a child with albinism, and I’ve been a parent liaison with NOAH for the past four years.
Contact: emily.urquhart@albinism.org
Published: June 27, 2022
Thank You, Banz!
Join us in sending a special shout-out to New Parent Toolkit Donor, Banz! Thank you, Banz, for donating your careware for kids to families with newly-diagnosed children with albinism.
www.albinism.org/new-parent-program
Published: June 27, 2022
NOAH Events This Week!
Wednesday: Young Adult Connections
June 29th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! Join us to share experiences and connect with fellow PWAs.
www.albinism.org/NOAH-Connections/#young-adults
Published: June 27, 2022
Thursday: Adult Connections
June 30th at 9:00pm ET // 6:00pm PT
Adults with albinism, we can’t wait to “see” you this Thursday at 9pm ET // 6pm PT!
New to the group? Now’s the perfect time to join in the fun! Sign up today:
www.albinism.org/NOAH-Connections/#adults
Published: June 27, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: June 27, 2022
| Thursday, July 6th: NOAH Connections: Teens | Thursday, July 21st: NOAH Connections: Teens |
| Wednesday, July 27th: NOAH Connections: Young Adults | Thursday, July 28th: NOAH Connections: Adults |
Juneteenth
“The historical legacy of Juneteenth shows the value of never giving up hope in uncertain times.”
On this day commemorating the end of slavery in the US, NOAH celebrates the freedom, accomplishments, and contributions of Black individuals to our NOAH community.
https://nmaahc.si.edu/blog-post/historical-legacy-juneteenth
Published: June 20, 2022
IAAD Fundraiser Shout-Out!
Join us in sending a special shout-out to the NI NOAH and South Chicagoland & NW Indiana IAAD Walk groups, who both hosted events last weekend! Thank you for spreading albinism awareness and raising funds for NOAH.
Want to host your own fundraiser? Check out the easy & fun options at www.albinism.org/fundraisers
Published: June 20, 2022
Sponsor Spotlight!
Join us in giving a special shout-out to our NOAHCon 2022 Opening Session Sponsor, Epstein | Ostrove!
Do you know a company that would benefit from exposure at NOAHCon? Help us spread the word of limited sponsorship opportunities available!
www.albinism.org/NOAHCon/sponsor
Published: June 20, 2022
Fundraiser Shout-Out!
Join us in sending a special shout-out to Marleena, Kathi, Caroline, Betty, Karen, Casey, & Cassandra who are all participating in our Adopt-A-Day Countdown to NOAHCon Fundraiser!
Are you working on filling your calendar? Let us know on our recent Facebook Post.
Thanks to these awesome fundraisers, Spiffy is getting closer to Orlando! If you haven’t started your calendar, it’s not too late to help Spiffy on his journey! Check it out today:
www.albinism.org/fun/adopt-a-day
Published: June 20, 2022
Congratulations, Mackenzie!
NOAH is delighted to announce that Mackenzie Strong has been selected as the honorable mention applicant for the 2022 Michael J. McGowan Leadership Scholarship Award.
Mackenzie is a rising junior at Illinois College, where she is studying secondary education and history, with a minor in political science.
Learn more about Mackenzie: www.albinism.org/leadership22
Published: June 20, 2022
- NOAH community member, Colleen Young, earned her 4th gold medal of the night and set an American record in the Women’s 100M Breaststroke SB13 at the 2022 Para Swimming World Championships last week. Congratulations, Colleen! https://bit.ly/3tOijNo
NOAH Events This Week!
Tuesday: Parenting without Pigment
June 21st at 9:00pm ET // 6:00pm PT
Calling All Parents without Pigment!
Join Robin French this Tuesday, June 21st at 9pm ET // 6pm PT to share your worst & funniest parenting stories!
www.albinism.org/NOAH-Connections/#pwp
Published: June 20, 2022
Thursday: Teen Connections
June 23rd at 8:00pm ET // 5:00pm PT
Teen PWAs – school’s out, and we can’t wait to kick off summer with YOU! Join us this Thursday at 8pm ET // 5pm PT to start summer relaxation with your friends with albinism.
www.albinism.org/NOAH-Connections/#teens
Published: June 20, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: June 20, 2022
| Wednesday, June 29th: NOAH Connections: Young Adults | Thursday, June 30th: NOAH Connections: Adults |
| Thursday, July 6th: NOAH Connections: Teens |
Happy International Albinism Awareness Day!
We hope you’ll join us TONIGHT at 8pm ET // 5pm PT for NOAH’s IAAD celebration on Gatherly. All friends of NOAH are welcome to join, so RSVP now & get ready for games and fun with the albinism community!
www.albinism.org/NOAH-Connections/#iaad
Published: June 13, 2022
NOAH’s Adopt-a-Day Fundraiser Starts Today!
Want to spread albinism awareness and support NOAH but not sure where to start? Join us for the Adopt-a-Day Fundraiser!
Download your own calendar and collect donations in the amount listed to “adopt” each day as we celebrate albinism in a “Countdown to NOAHCon!” Everyone who fills their calendar will have the chance to win a NOAH Prize Pack!
Learn more and start YOUR calendar today:
www.albinism.org/fun/adopt-a-day
Published: June 13, 2022
Donations Needed for NOAHCon Silent Auction!
The conference is fast approaching! Here’s an easy way to give back, whether or not you are attending the conference. NOAH is looking for donations to the silent auction. If you have a great item you would like to donate or know someone you can ask to donate an item in support of NOAH, please let the silent auction team know. All funds go to support NOAH.
Ideal donations are those you would like to bid on. Donations should be new or homemade items such as, electronics, gift certificates, children’s items. For further information please contact auction@albinism.org
Published: June 13, 2022
Limited Late Registrations Available!
We are excited to share that a limited number of adult late registrations will be accepted through June 22nd!
Don’t miss out on the magic of NOAH’s national conference…register today: albinism.org/NOAHCon/registration
Published: June 13, 2022
Last Call for Kennedy Space Center & Icon Park!
Want to join us for a pre-conference excursions to the Kennedy Space Center or Icon Park?
Add your name to the waitlist by June 15th – if we get enough interest, we will add another bus to each trip!
www.albinism.org/NOAHCon
Published: June 13, 2022
- NOAH community member, Ashley J. Hicks, was recently cast in the 2022 Disney Television Discovers: Talent Showcase. Congratulations, Ashley! https://www.instagram.com/p/CeebpnfuOn1/
- FYI: Submissions for the Rare Artist Program are now Open!The Rare Artist Contest provides a national platform for rare artists to showcase their artwork and highlight their stories.Learn more or submit your art at: https://everylifefoundation.org/rare-artist/
NOAH Events This Week!
TODAY: IAAD Party on Gatherly!
June 13th at 8:00pm ET // 5:00pm PT
Join us on Gatherly for a virtual IAAD celebration with the NOAH Community, TONIGHT at 8pm ET // 5pm PT.
All friends of NOAH are welcome – RSVP now!
www.albinism.org/NOAH-Connections/#iaad
Published: June 13, 2022
Tuesday: PWAs in the Legal Profession
June 14th at 8:00pm ET // 5:00pm PT
Calling all law students, lawyers, judges, and paralegals with albinism!
Join fellow PWAs in the legal profession for conversation and connections this Tuesday at 9pm ET // 6pm PT.
New to the group? Join today!
www.albinism.org/NOAH-Connections/#legal
Published: June 13, 2022
Wednesday: Young Adult Connections
June 15th at 9:00pm ET // 6:00pm PT
Young adults, join us this Wednesday for a special session of NOAH Connections.
We’ll discuss applying for jobs!
www.albinism.org/NOAH-Connections/#young-adults
Published: June 13, 2022
Thursday: Adult Connections
June 16th at 9:00pm ET // 6:00pm PT
Adults with albinism, join special guest host, Erika Evans, this Thursday for our next session of Adult NOAH Connections. We can’t wait to see you there!
www.albinism.org/NOAH-Connections/#adults
Published: June 13, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: June 13, 2022
| Tuesday, June 22nd: NOAH Connections: Parenting without Pigment | Thursday, June 23rd: NOAH Connections: Teens |
| Wednesday, June 29th: NOAH Connections: Young Adults | Thursday, June 30th: NOAH Connections: Adults |
Announcing: NOAH’s Adopt-a-Day Fundraiser!
Want to spread albinism awareness and support NOAH but not sure where to start? Join us for the Adopt-a-Day Fundraiser!
Download your own calendar and collect donations in the amount listed to “adopt” each day as we celebrate albinism in a “Countdown to NOAHCon!” Everyone who fills their calendar will have the chance to win a prize!
Learn more and start YOUR calendar today:
www.albinism.org/fun/adopt-a-day
Published: June 6, 2022
You’re Invited!
Join us on Gatherly for a virtual IAAD celebration with the NOAH Community, Monday, June 13th at 8pm ET // 5pm PT.
Sign up today!
www.albinism.org/NOAH-Connections/#iaad
Published: June 6, 2022
Congratulations, Sarah!
NOAH is delighted to announce that Sarah Kane has been awarded the 2022 Michael J. McGowan Leadership Scholarship Award.
Sarah is a rising senior at University of Pennsylvania, where she is studying astrophysics with a minor in philosophy.
Learn more about Sarah: www.albinism.org/leadership22
Published: June 6, 2022
Sponsor Spotlight!
Join us in giving a special shout-out to our NOAHCon 2022 Welcome Reception Sponsor, Under the Same Sun!
Do you know a company that would benefit from exposure at NOAHCon? The sponsorship deadline has passed, but we still have limited sponsorship opportunities available.
Encourage them to learn more at: www.albinism.org/NOAHCon/sponsor
and contact sponsors@albinism.org to set up a conference sponsorship today!
Published: June 6, 2022
Support the HPS Network!
On Friday, June 10th the HPS Network will be hosting an interactive virtual event devoted entirely to listening and learning from patients & caregivers living with HPS.
All NOAH community members are encourage to attend to support the HPS Network & our community members with HPS!
For more info or to register, visit www.hpsnetwork.org/el-pfdd
Published: June 6, 2022
High-Contrast Baby Books Needed!
NOAH’s New Parent Program is in need of books for New Parent Toolkits and we need YOUR help. If you’d like to purchase a book (or a few!) to donate to this program, check out our Amazon Charity List:
Published: June 6, 2022
NOAH Events This Week!
Thursday: Teen Connections
June 9th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday for our next session of NOAH Connections just for you.
See you there!
www.albinism.org/NOAH-Connections/#teens
Published: June 6, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: June 6, 2022
| Monday, June 13th: NOAH Connections: IAAD Party on Gatherly! | Monday, June 14th: NOAH Connections: PWAs in the Legal Profession (rescheduled!) |
| Wednesday, June 15th: NOAH Connections: Young Adults | Thursday, June 16th: NOAH Connections: Adults |
| Tuesday, June 22nd: NOAH Connections: Parenting without Pigment | Thursday, June 23rd: NOAH Connections: Teens |
| Wednesday, June 29th: NOAH Connections: Young AdultsThursday, June 23rd: NOAH Connections: Teens | Thursday, June 30th: NOAH Connections: Adults |