Sunday, January 10, 2021

Study Asks Participants When They Disclose Facial Differences With Others


EDITOR'S NOTE: This Moebius Syndrome Foundation Interview study hopes to focus on learning from people whom have facial differences when they decide to disclose their differences with friends. Study participants will receive a $15 Amazon gift card for their time and answers. 

Read more about the study below. The image above features all the same information that appears below!

Introduction and Study Details

We want to learn about the experiences of people with facial differences in deciding whether or not to discuss their difference with other people. Do you have a facial difference of any kind (for example, cleft lip/palate, burns, a scar, hemifacial microsomia, Moebius syndrome, facial paralysis, Treacher Collins syndrome, or a skin conditions)? Have you discussed your facial difference with friends, colleagues, romantic partners, etc.? What was the outcome? We want to interview you for a study about if and when you inform other people about your difference. 

What would I do as a study participant? 

  • 30-60 minute interview via phone, video call, or in person
  • Get a $15 Amazon gift card

Who is eligible to participate? 

  • Have any kind of facial difference (that can be covered up or not)
  • 18 years or older
  • Live in the United States
  • Communicates in English

What will we do with the study? 

The long-tern goal f this project is to develop recommendations for people with facial differences and their families about discussing facial difference with others. 

Who is the principal investigator? 

Kathleen Bogart, PhD is an Associate Professor of Psychology at Oregon State University. She studies stigma in facial difference and disabilities, has a facial difference herself, and is an advocate. 

To learn more or to participate contact principal investigator Kathleen Bogart, PhD at Kathleeon.bogart@oregonstate.edu
 

Friday, January 8, 2021

Research Opportunity: Speech Pathology Among Adolescents and Adults With Moebius Syndrome


EDITOR'S NOTE: Please review the information below from researchers at Artevelde University College of Ghent. The researchers state what they are hoping to learn about speech pathology for people born with Moebius syndrome. If you think that your experience could help them with their research, and you are eligible according to their guidelines, reach out and contact them or fill our the questionnaire at the link below. Supervising researcher is liesbet.desmet@arteveldehs.be or student researchers julie.velahe@student.artveldehs.be or julivand46@student.arteveldehs.be 


We are two students of the study programme Bachelor in Speech and Language Therapy at Artevelde University College Ghent. As part of our Bachelor's thesis Functional complaints in adolescents and adults with Moebius syndrome, we would like to question people with Moebius syndrome aged 12 years and older via an online survey.

Since there has already been written much about functional complaints in children with Moebius syndrome, the focus here is on adolescents and adults. In this way, we hope to be a driving force for conducting more scientific research and thus increase public awareness of this syndrome. Therefore we were wondering if you would like to share our online survey and poster in this group?

In the poster you will find more information about our research (see poster above). 

Participants can fill in the questionnaire via this link

We kindly ask you to fill these in before the end of February.


We thank you in advance
Kind regards

Wednesday, January 6, 2021

Moebius Syndrome Awareness Day Press Release






EDITOR'S NOTE: We are pleased to share and promote Moebius Syndrome Awareness day. This press release shared with us by the Moebius Syndrome Foundation, Moebius Syndrome Research Trust, and Many Faces of Moebius Syndrome may be used to raise awareness with your local news and media outlets. 

Join us as we stand united to raise awareness on January 24th. 


Press Release – Moebius Syndrome Awareness Day 2021

The Many Faces of Moebius Syndrome (www.mfoms.org), the Moebius Syndrome

Foundation (www.moebiussyndrome.org), the Moebius Syndrome Research Trust

(www.moebiusresearchtrust.org), the Children’s Craniofacial Association (www.ccakids.com), and Face Equality International (www.faceequalityinternational.org), are proud to announce the 11th annual Moebius Syndrome Awareness Day which will be celebrated worldwide on Sunday the 24th of January, 2021.

Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius Syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.

It is estimated that there are only between 10,000 to 25,000 cases of Moebius syndrome worldwide.

In past year's Moebius Syndrome Awareness Day has been a resounding success and saw participation from every continent on the planet – the main-focus is to create awareness. MSAD events have taken place around the globe in homes, schools, churches, workplaces, auditoriums, and outdoors. Dozens of news stories have hit the headlines, wound up on the airwaves, and blasted off into cyberspace via various print, TV, radio and social media news publications!

Family, and the importance thereof in the lives of individuals who have Moebius syndrome is the focus of this year's Awareness Day. "It is a tribute to the many families around the world who are often the unsung heroes of our lives" says Tim Smith, President of the Many Faces of Moebius Syndrome, who himself has the condition.

"There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius Family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius Syndrome a little easier” says Vicki McCarrell, former President of the Moebius Syndrome Foundation.

Moebius Syndrome Awareness Day is held annually on the 24th of January, the birthdate of Professor Paul Julius Moebius, the doctor who first diagnosed the disorder in 1888.

Please join the Global Moebius Syndrome community and take part in one of the many family, or virtual gatherings taking place on January 24, 2020. We encourage you to proudly wear purple and do some of your

own research to educate yourself and others about Moebius Syndrome. We appreciate your support and look forward to the biggest Moebius Syndrome Awareness day ever!

New England High School and College Students Apply For FFC 2021 Scholarships!


Editor's Note: New England residents! Please read on to learn more about the Foundation for Faces of Children 2021 scholarships. We are excited to share this opportunity to further your secondary education. 

Applications for FFC's 2021 Scholarship Awards are NOW being accepted! Students born with a facial difference who reside in New England and are pursuing a Secondary Education degree may qualify. For full details, please go to: https://facesofchildren.org/scholarship/


☄️All documentation must be received by March 1 to be considered.☄️

Please apply HERE


The program annually awards post-secondary education scholarships (college or vocational/technical school) to promising students born with a facial difference. High school graduates or students currently attending college who are residents of New England (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont) are eligible to apply. The Foundation selects award recipients based on their academic performance, extracurricular activities, and community service. In 2020, FFC has awarded $25,000 in scholarships.





Sunday, January 3, 2021

Thank You Real Food Blends, PLUS A 2020 RECAP From Our Development Director



Today we would like to thank Real Food Blends for placing an advertisement in our most recent newsletter. This newsletter is vital in sharing the impactful stories from our community. New and existing families within our community are very grateful for your help in keeping this program alive. It is a lifeline for all, letting them know they are not alone. We cannot think of a more important message than that one especially during a time when we are being told to stay socially distant from others.


To get a sense of the type of stories we tell in our newsletter, an article capturing our 2020 fundraising achievements written by Development Director, Christine Andler. A typescript version development accomplishments can be found below in order to make this story accessible to all.

Read our whole E-Newsletter by clicking here.

Thank you, again, Real Food Blends. Go to their website to place your order, and learn more about the high-quality, nutritional "100% real food meals for people with feeding tubes."






If you would have told me in January the 2020 Development Letter to you all would shape up anything like this, I would have thought you were on another planet! It was nothing short of heartbreaking to see the cancellation of two CCA golf tournaments, countless family fundraisers, and to have most of our large sponsorships for Retreat pull support as the ripple effects of this pandemic took its toll on us. While this time has been beyond challenging, there are some incredibly beautiful silver linings to this year. The one I want to illuminate is how the pandemic gave us the opportunity to re-imagine (and fast) how we fundraise -- with the help of so many of you!

I am incredibly humbled by the efforts of our CCA community. From our amazing families, staff, board members to new incredible friends who wanted to give and found us during an extreme time of need. I would especially like to extend our thanks to these shining stars:

Early in this year we were able to get in two wonderful in person family fundraisers for CCA.

Lisa Bowers (please check out her feature on page xx to see all of her efforts!) partnered with Madelyn Karchut for her Senior Give Back project: a Spaghetti Dinner Night that raised over $7,000! Also, Liz and Nova Cox did an amazing job at securing CCA as the beneficiary for the 2020 Massachusetts State Breaking Championship, which raised over $5,000!

As the year went on, we saw other socially distanced “events” and fundraisers dreamed up to help us raise money. TheCCA Marketplace became a wonderful tool for us to find friends and families to profit share a portion of their sales back to CCA. Sue Giles led the way with her girlfriends Boon Supply Co. shopping event, Michele Gonzales sold Jayden’s hand drawn sugar skull stickers, Courtney Schmidt offered her One Hope Wine fundraiser, artist Julie Lyles pledged support with her original watercolor paintings, Allie Quinn and Jenny Sollymossy shared their Color Street businesses, Maigan Baker hosted a successful Cards for a Cause party, our Outreach Director, Khadija Moten, crafted vinyl decals and custom Starbucks cups via her Etsy shop, plus other companies are still helping us “shop for a cause” on an ongoing basis.

We’d also like to send a huge shoutout to Patricia Simon for investing in the CCA logo gaiters that we have been able to sell to help stop the spread of germs! We truly thank all of you who purchased from our Marketplace and webstore. Please take a look at our current offerings for great gifting options throughout this holiday season! So far, the CCA Marketplace has brought in nearly $5,000!

While some of us utilized retail therapy, some of you have been working on your “Quarantine Bodies” and got into the fitness craze. We are so thankful for the folks who hosted fitness fundraisers for CCA! URU Yoga in Pensacola, FL, and Tula Yoga, in Aberdeen, NJ both gave benefit yoga classes. Recently, Crystal Kouri taught kickboxing in the park to raise funds in honor of her son, PJ, and they were able to donate over $300 from their high intensity efforts.

Two amazing ladies, our Program Director, Annie Reeves, and Board Member, Kelly Cunha, went the extra mile and dug into their own personal networks to raise incredible amounts on behalf of their birthdays – together they raised almost $10,000!

Speaking of incredible Board Members, Bill Mecklenburg did not let the early effects of the pandemic halt his fundraising efforts one bit. I was blown away how his network, who usually give and participate in the annual Morgan Meck Match Play Invitational (MMI) golf tournament, gave and gave generously even after learning the event was canceled. In all, the 2020 MMI raised $70,271 and continues to see funds come in even as this letter went live. This amazing group of donors are loyal and a true testament of Bill’s love and hard work he does constantly for CCA.

Our board keeps delivering miracles, as Board Member, Steven Weiss, his wife, Petty Weiss, and his mother, Ellen Weiss, campaigned and delivered an incredible CAM fundraiser totaling over $16,000 in just a few weeks from their own network of generous friends and family. This is the type of giving that truly moves the needle for CCA. The Weiss family gathered all of this financial support via a completely zero cost “virtual” fundraiser. Even though we call this fundraiser a “virtual” one, we know that the time invested was real and significant and the work done by Petty and Ellen entailed phone calls, emails, and endless enthusiasm. Thank you, Weiss Family, for this spectacular job!

In addition to all the virtual activities CAM brought this year, we also had some of our CCA community do a special CAM month funder that generated amazing results, too. Thank you to our top fundraisers: Chrissy Clinton, Khadija Moten, Ray Merenstein, Dana Fernando, and Shannon Marie LaBarbera.

Thanks to the connective force of social media, we gained invaluable new friends. Manny Ventura ran with his handsome smile for the entire month of July for Cleft and Craniofacial awareness and raised over $12,000 for five different charities including CCA. He has grown into a big piece of our CCA virtual programming and we are grateful for his friendship. LaDarius Davis, too, became a certified Speakers Bureau member and a huge part of our outreach programming. For CAM, he and his sister, Ceairra Davis Fruster gave 50% back of a custom embroidered CCA facemask to CCA and raised over $400! Another amazing soul we have e-met is Chelsea Buyalos, who has become a beautiful champion of acceptance and has used her talented voice to do virtual benefit concerts on behalf of CCA. Speaking of music, thanks to Instagram we connected with the utterly talented Josh Daniel’s Band (check his feature on page xx) and with his nightly “Couch Tour” and raffle, hosted by 5 Points Realty and Briley Burris, he raised $22,050 for CCA!

A special friend to CCA is Master Gem Cutter, Denny Bradley. We have been the incredibly lucky to be the recipient of his beautiful gemstones and this year he donated an exclusive nearly 30-carat citrine necklace to be a part of our 2020 Ginger Town Holiday Fundraiser that will be up on our site soon! Speaking of Ginger Town, we cannot thank NorthPark Center’s RJ Reissig enough for working so hard to come up with a creative solution to our annual tradition and partnership with NorthPark. More info will be out soon, but RJ’s love for CCA has warmed our hearts up more than a tray of fresh gingerbread, just out of the oven.

Without you, this life-changing work would not be possible. Thank you for all the creative ways you have helped us in such a trying year. As we head into the “Giving Season,” we hope CCA remains at the top of your list to support. We are still feeling the heavy effects of a large dip in donations and the loss of our big fundraisers. Every gift truly counts. Help us end the year with the momentum to continue our amazing programs which so many of you love very much.

Warmly,

Christine Andler
Director of Development