Saturday, May 21, 2022

#AnnualRetreat2022 Let's Have Some Fun: Attractions, Parks, Museums and More in Dallas




There are so many fun things to do in Dallas  Between sessions, and gatherings we hope you have time to explore the city. Let’s take a look at all the wonderful attractions Dallas has to offer. I will say I limited my list to this venues that were accessible or adjacent to the M Line trolley. So no car, no problem, there is some thing for everyone nearby the Sheraton Dallas on Olive Street. 

Perot Science Museum 


First, the science museum, named after political figure Ross Perot and his wife, seems to be a “must-go-to” for all that love science. I hear they have great exhibition space for kids and some stompingly large dinosaur skeletons, and a gemstones exhibition, too. There truly is something for this one of kind museum of natural science. 


Dallas Art Museum 

Next up, we are going to switch gears a bit and take a look at something quieter than dinosaur roars and the clinking of explorers looking for gems. The Dallas Art Museum is one of my favorite spots to find some peace and solitude. It also is a feast for the eyes, and its alll for FREE. Yes, you read that right, it’s free. The museums exhibitions include a sculpture garden, Islamic art, and special exhibitions on modern painter, Michel Basquiat, and post World War II abstraction from Asia to the Americas, too. 

Both times I have visited, I never got off the first floor, and I didn’t feel I had to. This is a true gem, Check it out for free with your family and friends. There is a cafe to grab a bite to eat, and lots of open space around the museum as well. I have spied many a food truck in that area. So keep your eyes peeled, and your mouth watering


Dallas World Aquarium

The ocean and summer will forever be synonymous to me. Swim with the fishes, sharks, and more at the Dallas World Aquarium. Visitors will be dazzled by the wide variety of wildlife that live in and near water at this state-of-the-art aquarium located in downtown Dallas. Tickets are $25 per adult, $18.95 for kids ages 3-12. Ages 0-2 gain free admission. Get your tickets now as the museum has timed entry admission in place.


Sixth Floor Museum

History buffs, do not despair there is something for you too! Just a jaunt away from the Aquarium is the Sixth Floor Museum, which to me as a Bostonian and lover of all things John F. Kennedy, is hallowed ground. See Dealey Plaza, and the X in the roadway in front of what was the Texas School Book Depository where Lee Harvey Oswald’s final and fatal bullet stuck and killed the 35th president of the United States on November 22, 1963. Inside the building immerse yourselves in pop culture, the political climate and history of the late 1950s and early 1960s when Kennedy ran for and became President. Whether blue, red, or independent, the Sixth Floor Museum is a "don’t miss" while visiting Dallas. There is also a trolley tour that takes you around where JFK, and Jackie Kennedy travelled (or were supposed to) on that fateful day. 


Klyde Warren Park 

For those brave enough to go outside June's Dallas heat, head over to Klyde Warren park. There you can enjoy an expansive outdoor space with a children's park and play area, botanical garden, reading and gaming area, places to sit and eat, and more. Nearby you can grab a bite to eat from one of the food trucks that park nearby daily, or pop over to coffee shop or grocery store to pick up picnic essentials for you to enjoy with your CCA friends. 


And So Much More...

Because everything is bigger in Texas, there is always more to explore. The bishop arts district, the history of the rootin’ tooting cowboys in Fort Worth, or the award winning sports teams that play in Arlington, or at Cowboys stadium. Dallas never disappoints. Gather more ideas here in this article with suggestions from Girl From Texas (https://www.agirlfromtx.com/dallas-summer/) as she gives us a boots-on-the-ground view of what to do this summer in Dallas. Keep an eye out for her restaurant suggestions in this comprehensive blog piece.

Sunday, May 8, 2022

Grand Journeys: Tips and Tricks For Grand Caregivers


 

By Kara Jackman

My grandmother was a huge part of my days recovering from surgeries. She would bring her pastel crocheted blanket to the living room, and create a makeshift bed out of the loveseat in front of the TV. I remember these days fondly, and I am sure she did, too, as she was able to put her nursing assistant skills to work with her own granddaughter. Grandparents, along with family and friends who act in a grandparent-like capacity are a vital part of the family network that supports children and individuals affected by facial differences. They care for us, their kids, and their grandbabies in so many different ways. 

Encouragement and moral support is one way to help support the family member with a child with a craniofacial difference. As a grandparent there is not much you can do to take away the suffering of your grandchild, but there are ways to smooth the inevitable bumps in the road, like major surgeries and other medical care. You can send text messages, write positive notes, volunteer to babysit, and write positive affirmations to encourage caretakers to stay positive in front of their affected child. Care packages sent to the hospital, or packed before a big surgery are also a welcome support, too. Things like quarters for the vending machines, favorite drinks, snacks, and chocolate can go a long way in making them feel your love from a distance. Another wonderful tradition we heard about from the Laugharn/Lance family is the “Surgery Eve Sendoff.” Before a big procedure or surgery, both sets of grandparents take the family out for pizza. It’s a nice way to bolster both your children and grandchild(ren)’s spirits and something to look forward to amidst the anxiousness. 

Though you may not be front and center for your grandchild’s medical care, you may be there when others in your community ask questions about the child or individual. Be ready with some prepared responses to likely questions like “Why do her eyes look different?” or “What is wrong with her face?” Melanie Howington, a grandparent who just hosted a webinar for grandparents called Grand Journeys, recommends sharing something about what makes the inquirer unique. “God made her with big eyes, and you have beautiful curly hair that God gave you.” “She has a bigger head so that her brain can grow.”  If a parent or another caregiver is nearby, invite them into the conversation, and don’t allow them to “shush” the child or tell them to look away. Children are often just curious, scanning for differences. Reassure the other parents that it is okay to ask questions, if you are comfortable responding to them. 

Being a support person during the tough times around questions and teasing is one thing, but what about the trauma that your grandkids experience at the hospital during medical appointments and surgeries? Some of our grandparents suggest keeping an eye out on their outlook on life, emotional wellbeing, and social emotional interactions with others. “Reassure them that each surgery or medical intervention is for a reason, to breathe or eat better,” Melanie says. Siblings can help reassure too, because they are often the greatest ally the affected child has in their life. 

For days when the child will be in the hospital, suggest to the parents that a child life specialist be in attendance before surgeries or at medical appointments that might be scary. They have a whole host of tips, tricks, and games to keep kids distracted. Grandparents can help remind parents to model a positive, calm demeanor. The child will pick up on any worry and upset that the caregiver shows. Modeling an easy manner is vital to keeping trauma at bay. Melanie shares that a doctor told her that you can “raise a child differently and she will be different, or raise them just like you would any other child.” Encouraging caregivers and parents to normalize the hospital, medical equipment, and other things in the family’s life will help immeasurably. 

Maybe the most difficult part of being a grandparent is watching your child become a parent to a child born with special needs. There is so much grief and pain that you, as the grandparent, should acknowledge and validate. Don’t go overboard by bursting into the family dynamic to swoop in and save the day. Ask yourself is this a good time for me to step back or step in to help? Listening to what the parents or caregivers needs are in the moment, and honoring them is important to keeping the larger family dynamic healthy and happy. The family needs to have as close to a typical family experience as possible. Excellent awareness around boundaries will help you accomplish this seemingly monumental task. 

The ultimate goal of being a great grandparent or grand figure in the life of a child with a craniofacial difference is to be loving, fun, and encouraging. This should be your goal and role with all your grandchildren. Your children are strong, and supported by being part of the CCA family. They can do the hard things, too, with your loving guidance. The future will be bright for this next generation of CCA adults because of the impact you have on their lives.

Saturday, April 16, 2022

Sharing & Oversharing: How To Respect Privacy and Ensure You Are Not Misinformed Online




By Kara Jackman


In 2004, in the days before Web 2.0, and Facebook, I wrote an article about the ins and outs of conducting personal medical research online. Looking back on it now, in a world filled with “fake news,” and few people evaluating the links they share, the article reads as quaint, cautionary advice.


Today social media is such a huge part of our lives. We are easily influenced by the posts and videos people create. Not to mention targeted ads that show up after we’ve Googled something or maybe even just said it aloud.


We often play fast and loose with our own personal information and facts around a topic or issue. As a librarian that teaches research methods and evaluation of resource techniques to masters and doctoral level students, I want folks to read widely and deeply, and then come to their own conclusions about the topic at hand. That said, I also want those claims or beliefs to be backed up with high-quality, well-resourced evidence in the form of books and resources that are peer-reviewed and authoritative. 


Further, in an ideal world, I would encourage people to not share information that is not their own online. Let’s say someone posts a link to a video or article, and you see it, but it looks suspect to you. Do not reshare it. Instead, take a deeper dive and look at the creator of the piece of media. In libraries, we call this evaluation of resources. Use this rubric and then decide whether to share the link if it matches your view or take on the topic. Taking time to trace the source of a piece of media delivers better, more factual results. 


Sharing and Oversharing

Posting and resharing personal information on social media can be dangerous. (Check out number eight in this article.) Retweeting or sharing posts that are not your own could make others uncomfortable, embarrassed, or worse, even put them in danger. For example, by sharing someone is traveling on medical travel, you could put them at risk of theft, assault, or worse, physical danger. Additionally, sharing medical information without asking permission could potentially violate federal privacy law, a myriad of local privacy laws, HIPAA depending on your connection to the individual, and the person’s trust. 


But everyone else is sharing this post, Kara, why shouldn’t I?


Right, I know. I get that. You want to share, to rally support and show an outpouring of love, but please ask permission first.  Before you share, check to see if anything they wrote might contain sensitive medical information, or information about whereabouts that could be easily exploited by people outside your inner circle.


Getting Personal 

If you are posting about yourself or your family, think about the implications of putting the information out there. Not only are your children minors who cannot consent, you are also the guardian of their digital legacy. The positive side of sharing personal information is its ability to help build community, vent, and explain what you're experiencing and gather the support you need no matter where you are geographically. Measure twice; cut once applies: Draft a post and read it after a few minutes before you click “post” on your share. 


In general, keep your posts vague, do not go into great detail about where you are or what you are doing. Limit the amount of medical information in your post; not only do strangers read this - but advertisers, too! Your data is valuable to corporations and this information is private until you share it. Doctors would need waivers to share information about you; so consider your post a waiver of rights.


Stolen Images

Images are another huge issue in our community too. Pirates, predators, and others that are trying to make a quick buck may take photos and use them to gain sympathy and money. If you are worried about this, do what I see my friends with children doing. Post the pictures via a “story” that disappears after a limited time, or post them in a private group established for your child but take them down after a while, so they do not live on Facebook forever. Friends and family, do not share these photos with others without permission from the original poster, especially if they are posted in a story or private group. 


Sharing Medical Guidance and Personal Medical Information 

Personal medical information is one kind of content that we share on social media. Medical advice, information, and anecdotal remedies are another. Remember this when posing questions about your own care on social media. Some of the responses may not be helpful to your body and medical needs. When doing research on a medical topic, please go to reputable sources like those held in libraries. Many, if not all, resources in libraries are peer-reviewed, or fact checked, for inaccuracies and misinformation. If you are looking online, visit hospital websites or governmental agencies like the CDC or NIH. If you need access to certain medical journals, you can typically obtain this through your local library’s website. 


If you simply Google a topic, care to check who wrote the article, who published it, and what sources are cited at the end of the article. Evaluate the resource by using the CRAAP test. If you are reading advice in a forum, take a look at when it was posted, how many “upvotes” it has received, and understand the original poster could be literally anyone. Ask yourself questions like, “Is this information still relevant? What credentials does the author have or claim to have? Is this old, outdated information? What does the writer want to communicate and why? What motivated this author to write this information?”

 

People can be “wildly careless” about what they say and do on social media. Out in the real world, we do not believe every word we hear people say while walking down the street. Facebook, Twitter, and Instagram feeds are just online sidewalks. You can choose to engage with individuals you are walking by or not. You wouldn’t walk around with your wallet open, taped to your back. Likewise, be vigilant about what you make available online. Social media and the internet are immensely valuable resources when used properly and wisely! 


References

Social media etiquette for the modern medical student: …

https://guides.library.duq.edu/informationevaluation/CRAAP 

https://www.bustle.com/p/11-social-media-etiquette-mistakes-you-dont-realize-youre-making-7844531

https://www.postplanner.com/blog/facebook-etiquette-mistakes/

https://www.aspenideas.org/articles/how-to-stop-the-spread-of-fake-news-on-social-media

https://penntoday.upenn.edu/news/dangers-sharing-personal-information-social-media

https://digital-photography-school.com/what-to-do-when-your-images-get-stolen/


Saturday, April 2, 2022

Retreat 2022: Getting Around In Downtown Dallas






By Kara Jackman
After flying in and grabbing your bags, your next question will be "how does one get around Dallas, Texas?" Or maybe you may muse, "How do we get to the hotel?" Answers to these questions appear in this blog post ahead of our upcoming Annual Family Retreat and Educational Symposium in Dallas, Texas.You will be here, there, and everywhere before you know it...and for very little money. 

Lyft and Uber

Let's kick it off with taxis and rideshares. From the airport to Olive street, there are many ways to motor to our retreat destination, the Sheraton Hotel in Downtown. The average taxi ride to the hotel costs about $43. A ride from Lyft or Uber will run around the same price point plus, some additional fees, putting the total cost at approximately $45-$55. For something a bit more reasonable, keep reading to learn more about what the city has for public transportation.


DART Away To Fun

Retreat revelers can hop on in another sector of the transit system at the airport. You can take one of the DART buses at the airport to find your way to the hotel or to get around the city. Near the hotel, the D-Link buses are free and available in downtown Dallas.The maps and information on the DART website are extremely helpful. There are many accessibility options, too. Plan your travel with DART ahead of time. Download their app to your device, give them a buzz about your accessibility needs, and read up before you are wheels down in Dallas.


Trolley McKinney Street M-Line 


Photo Credit: Elliot Munoz


The good news is that once you arrive at the hotel, there is a way to get around in style and, perhaps more importantly, for free. This part of the Dallas Area Rapid Transit takes you up, down, and around McKinney Street in Dallas’ downtown. The M-Line trolley may be the only transportation you will need while at the retreat. Ride in style on this cool, vintage trolley that travels further and wider than this writer ever expected. You can choose to go to one of the many local museums from the aquarium to the sculpture garden, or check out the other hotels in the neighborhood. (Spoiler Alert: Our Sheraton was recently renovated, making it one of the newer properties in the area.) Finally, you can also explore trails for hiking, parks for frolicking, and other nearby open spaces to spend free time with your CCA friends. The trolley can be tracked online, and did I mention...it’s free. Donations are welcome. Learn more about this transit service at this website.


Try an E-Frog!




A what? Yes, I said E-Frog. E-Frog is an electric golf cart shuttle service that travels around various Dallas neighborhoods. All you need to do to make use of the service is text your departure and arrival locations and they will pick you up! Tips are encouraged for this free service. Get the phone number and check out the team behind this cool company here.


Walking

 

Walking is the best way to get to know the city. It’s one of my favorite ways to get a sense of place when I am traveling. I encourage you to walk around the area and explore while on the way to dinner or out to grab snacks and supplies. Please make sure to stay aware of your surroundings, and always walk with friends or family. Never walk alone, and stay around populated areas. 


Whether you may be walking to grab a bite or stepping out for some adventure, I hope to share with you some fun, local dining options, and attractions, all within walking distance in my next blog in this Dallas Retreat 2022 series.

Ta-ta for now. Next week, we will take a look at our downtown Dallas dining options. Say that 5 times fast as your retreat-themed speech pathology exercise! :-)

Sunday, March 20, 2022

Pain Management Without Pain Meds: A Holistic Approach To Caring For Your Pain



By Kara Jackman 

Disclaimer: The contents of this article are not intended to substitute for professional medical advice, diagnosis or treatment. Please consult your physician for personalized medical advice. These are suggestions to run by your medical team to reduce the use of opiates and opioid medications. 


Pain meds are a necessary evil that we must all endure as a craniofacial patient. The surgeries are very complex and painful which means opiates and opioids are taken to keep us comfortable. Opiates and opioids come with oodles of side effects, including constipation, cognitive distortion, drowsiness, dizziness, and lack of energy and motivation. Long term or frequent use of these medications could lead to chemical dependence or a substance use disorder.


What if I told you there are ways to reduce the length of time you are taking these medications? Or that there are ways to optimize your body’s ability to recover with over the counter pain medication and a few tricks I’ll outline below? Well, there are. Through nutrition, hot and cold therapy, breathework, and movement you may be able to speed up your surgical recovery time. I know your thinking “I can’t do this, I’m in too much pain. This is not for me. My pain levels are between 8-10.” Yes, I understand, but give me a chance. I’m not saying stop the pain meds prescribed, but rather find ways to reduce your use through these tips and tricks. 


Nutrition 

A strong body begins with proper nutrition. Believe it not, what you eat is far more important than how much you work out. An anti-inflammatory diet filled with healthy fats (olive oil, avocado, and coconut oil), green veggies, and lean antibiotic-free protein will reduce inflammation throughout the body. An acute inflammatory response that we all know too well is swelling to a traumatized area of the body. Other parts of the body can experience inflammation, like the stomach after you eat, or feet after a long walk. The body responds in the same fashion whether it be the surgery or the meal. A surgery or other medical intervention may result in acute swelling of the impacted area, so why not keep the overall amount of inflammation low before, during, and after the surgery by avoiding inflammatory foods like complex carbohydrates and simple sugars, so the body can efficiently repair itself. …And you can get off the post-surgical couch faster. 


Hot/Cold Therapy and Breathework 

Setting a strong baseline with our food choices is just the beginning. Another important layer is the use of hot and cold therapy. Infrared saunas and ice tub immersion are all the rage in athletic recovery and longevity circles. Few of us have access to a sauna or cryotherapy tank, but you can start small at home with a 30 second (or longer) cold shower, or hot bath to speed recovery. Cold therapy is also extremely helpful in calming the body, kicking the body into a relaxed mode, activating the parasympathetic nervous system. Combining both heat and cold exposure results in improved pain tolerance, a speedy recovery, and activates the parasympathetic nervous system keeping you cool as a cucumber. During the pos-operative period, the calmer you remain the faster you will be back on your feet. Combining this with breathwork, like box breathing, will improve your ability to recover faster and reduce anxiety you may experience during the entire surgical process.


Movement

The doctors always want you eating, drinking, and walking before you are discharged from the hospital. Demonstrating that you have some mobility before you go home helps the medical professionals know that you have agency and ability to thrive at home. Movement also helps with pain because it reduces inflammatory response at the cellular level. A study from the University of San Diego shows that just 20 minutes of exercise can have profound reduction of inflammation and pain, too. Don’t worry, I don’t need you doing jumping jacks or run a marathon. I only hope you can get up, go to the bathroom, and maybe take a short walk down the hall. 20 mins, remember? You may need some mental fortitude to make this happen, but I can say from personal experience that your first walk will lead to your final steps out of the hospital. During your recovery at home, ensure that you keep moving with chair yoga, light stretching, or a modified tai chi routine. Much like the suggestions above, movement yields both physical and mental health benefits, too. An angry, anxious mind will not heal. Recent research shows that movement could decrease healing time by 25%, and any associated adverse emotional reactions through all those feel good hormones that are released. 


In summary, treating the whole body is mission critical to get you out of bed and back to life. We all know that once you arrive home the real healing begins. Adding these suggestions to your doctor's orders may result in less need for narcotic or opioid pain medications. I encourage you to layer these holistic solutions depending on the severity of your pain. Pick one from each section and check in with how you feel. 

  • Is the nature of your pain better? (duller, less acute, etc.)

  • Has your pain intensity reduced? (scale from 1-10) 

  • Are you able to think about other things, focus, and experience some calm and contentment? 

The goal may be to see some improvement, not find yourself completely pain free. Improving the moment with these strategies may improve the speed of your recovery. 


Please also review our overview titled “Pain Management in Children” written by Dr. Earl Gage of Mercy Children’s Hospital in St. Louis for the doctor’s perspective. 


Resources

https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation


https://www.chiltonic.com/blog/2019/7/24/a-combination-of-hot-and-cold-therapy-may-be-just-what-you-need-to-treat-pain


https://www.webmd.com/balance/what-is-box-breathing




https://ccakids.org//wp-content/uploads/2017/09/one-sheet_painmanagement.pdf

Thursday, March 10, 2022

Call For Stories and Experiences with AI and Facial Recognition Software


Share Your Story


Do you have a facial difference & have you had any problems using facial recognition software? 

Do you expect to be treated fairly by AI software?

Help us to compile stories to take to the UN via this form

Face Equality International is an alliance of Non-Governmental Organizations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’.

We want to gather the experiences of people living with a facial difference around the globe, to inform and support our campaign efforts to make face equality a reality.

Thank you for considering taking part and sharing some of your story. If you have any questions about it, you can contact info@faceequalityinernationaol.org

Our privacy policy can be found here:

https://faceequalityinternational.org/privacy-policy/

You can find helpful links for advice on discrimination here:

https://faceequalityinternational.org/support/

Monday, February 21, 2022

FGFR Syndromes Collaborative March 17th & 18th Agenda Inside

Our friend and CCA Mom, Carolina Sommer will be hosting the annual FGFR Syndromes Collaborative Research Network Conference again this year on March 17 - March 18, 2022. She was gracious enough to share an early version of the agenda with us. Take a look and see if you recognize any familiar names! We, at CCA, do not want you to miss a minute of this virtual conference loaded with new research, personal stories, and  the latest interventions for our kids. We are so proud of the Sommers family and their incredible conference sponsored by Regeneron, Everylife, Born A Hero, and Seattle Children's Hospital. Hope you can join them on March 17 and 18th. 

FGFR Syndromes Collaborative Research Network Conference

March 17th & 18th, 2022



March 17, 2022 
 
8:15 am
Orientation to Webex
Brittany Richey
Manager, Administration
Seattle Children’s Research Institute
 
8:30 am
Introduction
Carolina Sommer
Founder/CEO
Born a Hero Research Foundation
 
 
Introductions

8:40 am
Basic Science Introduction (10 minutes of Q&A)
Dr. David Ornitz, M.D., Ph.D.
Alumni Endowed Professor
Developmental, Regenerative and Stem Cell Biology Program
Neurosciences Program
Washington University in Saint Louis
 
9:05 am
Clinical Science Introduction (10 minutes of Q&A)
Dr. Andrew Wilkie, M.D., Ph.D.
Nuffield Professor of Pathology
Oxford University
 
9:30 am
Advances in prenatal detection of FGFR conditions (10minues of Q&A)
Jessica Giordano, MS, CGC 
Assistant Professor of Genetic Counseling in obgyn
Columbia University
 
9:55am
Introductions Q&A
Joan Richtsmeier, Ph.D.
Distinguished Professor
Pennsylvania State University
 
  Musculoskeletal, Part 1
 
10:25 am
Introduction
Delaney Cunha
Pfeiffer Syndrome Advocate
 
10:30 am
Benefits of my Daughter’s Spine Surgery
Synthiea Kaldi
Parent Advocate
 
10:40 am
Cellular therapy for Osteogenesis Imperfecta    
Dr. Ivo Kalajzic, M.D., Ph.D. 
Professor, Director, Center for Regenerative medicine and Skeletal Development
University of Connecticut Health Center
 
11:05 am
Skeletal Stem and Progenitor Cells Maintain Cranial Suture Patency and Prevent Craniosynostosis
Dr. Natalina Quarto
Senior Scientist
Stanford University School of Medicine
 
11:30 am
Spine and extremities in FGFR2 related conditions: when and why to worry 
Dr. Klane K. White, MD, MSc
Director, Skeletal Health and Dysplasia Program
Medical Director, Orthopedic Research
Seattle Children’s Hospital
Professor, Orthopaedic Surgery and Sports Medicine
University of Washington
 
11:55 am
Musculoskeletal, Part 1 Q&A
Amy Merrill-Brugger
Assistant Professor of Biomedical Sciences, Herman Ostrow School of Dentistry of USC
Assistant Professor of Biochemistry and Molecular Biology, Keck School of Medicine of USC
 
 
12:25am
Break (30 minutes)
 
  Musculoskeletal, Part 2
 
12:55 pm
Introduction
Ellie Hollingshead
Pfeiffer Syndrome Advocate
 
1:00 pm
The neurological effects that over 90 surgeries has had on my son and our family
Dawn Brand
Parent Advocate
 
1:10 pm
Surgeon-Orthodontist partnership in management of FGFR syndromes
Srinivas Susarla, DMD, MD, MPH
Associate Professor, Plastic Surgery
University of Washington School of Medicine
Oral and Maxillofacial Surgery
University of Washington School of Dentistry
 
Hitesh Kapadia, DDS, PhD
Chief of Craniofacial Orthodontics
Seattle Children's Hospital
Director, Fellowship Training Program in Craniofacial Orthodontics
Assistant Professor, Orthodontics
University of Washington School of Dentistry and Plastic Surgery
University of Washington School of Medicine
 
1:35 pm
FGFR-driven skeletal dysplasias and approaches to treatment
Dr. Carl Dambkowski, MD
Chief Medical Officer, QED Therapeutics
VP, Clinical Strategy, BridgeBio Pharma
  
2:00 pm
From bench to bedside: how to develop transformative therapies for patients with rare bone disorders
Dr. Elvire Gouze, Ph.D.
Founder and CEO, Innoskel
 
2:25 pm
Musculoskeletal, Part 2 Q&A
Amy Merrill-Brugger
Assistant Professor of Biomedical Sciences, Herman Ostrow School of Dentistry of USC
Assistant Professor of Biochemistry and Molecular Biology, Keck School of Medicine of USC
 
2:50 pm
Advocating for the Rare Disease Community
Dylan Simon
Newborn Screening and Diagnostics Policy Manager
Everylife Foundation for Rare Diseases
 
3:15 pm
Closing Remarks
 
3:25 pm
END
 

March 18. 2022


8:15 am
Orientation to Webex
Brittany Richey
Manager, Administration
Seattle Children’s Research Institute

8:30 am
Welcome
Carolina Sommer
Founder/CEO
Born a Hero Research Foundation

8:40 am
Multidisciplinary Team at Seattle Children’s Hospital (10 minutes of Q&A)
Anne Hing, M.D. 
Professor of Pediatrics
Department of Pediatrics
University of Washington
Associate Director, Education and Academic Programs
Craniofacial Center at Seattle Children’s Hospital
 
  Neurological System

9:05 am
Introduction
Avery Cooper
Pfeiffer Syndrome Advocate

9:10 am
Dealing with surgical anxiety
Whitney Hollingshead
Parent Advocate

9:20 am
How Pfeiffer Syndrome Affects the Nervous System
Ioannis Mavridis, MD, PhD, FNYAM
Asst. Professor of Neurosurgery
Head, Department of Neurosurgery, Medical School, Democritus University of Thrace,
University General Hospital of Alexandroupolis, Alexandroupolis, Greece

9: 45 am
Understanding Cognitive, Psychosocial, and Educational outcomes in children with Craniosynostosis
Hoa Schneider, Ph.D.
Pediatric Neuropsychologist
BCH Cleft and Craniofacial Center
Instructor at Harvard Medical School/Boston Children’s Hospital

10:10 am
TBD
Cassandra Aspinall, MSW, LICSW, ACSW
Social Worker
Seattle Children’s Hospital

10:35 am
Best practices for helping an anxious child through surgery and other medical procedures
Cindy Ola, Ph.D.
Acting Assistant Professor
Psychiatry and Behavioral Sciences
University of Washington School of Medicine

11:00 am
Neurological System Q&A
Moderator, TBD

  
Respiratory System

12:00 pm
Introduction
Elisa Landmann
Pfeiffer Syndrome Advocate

12:05 pm
The Complexities of Life with a Trach: Home Health to Insurance
Falesha Johnson
Parent Advocate

12:15 pm
Incidence and Management of Obstructive Sleep Apnea in FGFR Syndromes
Cory M. Resnick, MD, DMD
Attending Physician, Oral & Maxillofacial Surgery Program
Boston Children’s Hospital
Assistant Professor
Harvard Medical School

12:40 pm
What parents need to know about children with tracheostomies
John Dahl, M.D., Ph.D., M.B.A.
Assistant Professor
University of Washington
Otolaryngology, Head and Neck Surgery

1:05 pm
TBD
Erin Mackintosh, M.D. 
UW fellow at the Pediatric Pulmonary Center
Seattle Children’s Hospital
UW instructor of Pediatric Pulmonary and Sleep Medicine.

1:30 pm
Communication Considerations in Patients with FGFR Syndromes
Lauren Beckett, MS, CCC-SLP
Speech-language pathologist, Instructor
Oregon Health and Science University (OSHU)

1:55 pm
Respiratory System Q&A
Moderator TBD
 
2:25 pm
Final Remarks
 
2:30 pm
END

Sponsors

 

Regeneron    

Born A Hero Foundation 

Everylife Foundation

Seattle Children's Hospital

     

  

Thursday, January 27, 2022

Camp Cosmos Online Event Set For Saturday, February 26th


 

Camp Cosmos returns with another Saturday of virtual programming for kids and caregivers. On Saturday, February 26th, ConnectMed will lead us in 90 minutes of fun and conversation on the theme of the "Power of Yet." Kids will be on camera pondering that power with games and activities, later they will create dream boards while caregivers talk about their concerns with the staff of ConnectMed. 

Please register for this event by Monday, February 14th, to receive your kids activity kit in the mail in time for Feb 26th. 
Please review the schedule for the rest of the year. Southern California friends should make special note of the in-person opportunities to gather in community. Additionally, there will be many more virtual gatherings throughout the year. The next one taking place in May 2022. Learn more on the ConnectMed website, explore their calendar, resources, sponsors, and staff at https://www.connectmed.org/ 

Many thanks to ConnectMed for creating these opportunities for families in Southern California and beyond!


Thursday, January 6, 2022

Medical PTSD, and A Few Ways To Manage It




By Kara Jackman

Episodes of medical PTSD can hit anyone at any time. We carry all this trauma around with us every day like an invisible backpack on our shoulders. It isn't until a triggering event occurs that we realize that backpack even exists. I know many in our CCA community experience these triggers on a daily basis, so I hope through a brief personal story that I can help you manage the anxieties, sadness, and other emotional pain caused by trauma in constructive ways.  

A Medical PTSD Triggering Event

A few months ago I had a sinus infection that necessitated some medical treatment. Antibiotics were in order, I had waited long enough. Thanks to COVID-19 and working at a University, I was required to go see my primary care for this particular doctor's visit. The appointment began pretty normally, lots of questions, I croaked out answers as the pain reverberated around my throat and vocal cords. Then, the physicians' assistant took the typical look in the throat a bit too far. She looked at my throat for over 20 minutes requiring me to open my mouth multiple times for long durations. My arthritic jaw was in acute pain, eyes were tearing up, and the tongue depressor got wet and gross. My gag reflex joined the party I was involuntarily invited to. I asked twice for her to get a new tongue depressor, but she only flipped it over. Then, finally, I gathered the courage to ask a third time. She obliged, but not before my gag reflex went off a few more times. 

What was taking so long? Why was she looking at my throat like it held hidden secrets of some grand Egyptian temple? She gazed and gawked for nearly half the appointment time. Whether the throat was infected or not, the end result was going to be the same thing, oral antibiotics, and maybe if I was lucky some steroids for the pain. 

And now the questions, "where are your tonsils?" she asked. 

"I don't know they probably got taken out, or never existed in the first place. Why?"  I responded. 

Breezily, she said, "I don't know. I was just wondering." 

I endured and persevered this long examination the entire time wondering if I needed surgery or if something was seriously wrong with my throat. Maybe I had really done some damage, or maybe this sinus infection was not a sinus infection at all. While I continued to worry and muse, she finally finished. 

It took all my courage to ask her again, as tears streamed down my face, “why were you looking at my throat for so long? 

She said, "I wanted to take a good look."

I asked, "Are you curious about my anatomy?" 

She said "No, i just wanted to make sure everything was clear." 

False. That was a lie.  Just saying...but it had to be said. 

Finally, I capped off our conversation by informing her that when anyone examined me for that long it meant surgery. I cried some more, figuring it was a better emotional road than the fury that sat in my chest. 

She said she was glad she told me that information. She was receptive and nimble enough to say she was grateful for how my past history informed this moment. 

After A Triggering Event

Days later, I was still hurting, sad, angry, upset. The event circulated around my head for a while after it happened. Each time I thought about it, though, I congratulated myself on how I handled it. The idea is to advocate for yourself, informing the caretaker or medical professional about the way you feel in the moment. This could positively affect how they manage future patient interactions, and future appointments with you. 

De-Stress and Process

Also, in the days that follow this kind of incident, create time and space to process the emotions and thoughts you are dealing with. This part is hard, and for me involves some serious self care, yoga, exercise, taking a bath, painting my nails, reading and journaling, while cognitively restructuring my thoughts about the event. Negative or retriggering thoughts ("I'm so scared." "Maybe there really is something wrong with my throat.") lead to increased anxiety and sadness.  It is vital to distract yourself with fun things while you do the hard work of accentuating the positive thoughts and experiences from the triggering scenario. Though this is time consuming, and sometimes hard, cognitive restructuring and distress tolerance always help keep my emotional pain at bay. 

Talk To Someone

Image Credit: IStock

In addition to the internal work described above, you may want to talk to someone you trust about the triggering event and the past traumas you have endured. Be willing to accept help from people like trusted friends, therapists, parents, priest, pastors, or whomever you deem trustworthy. People in our CCA community are a perfect example of a group of people you can trust because they have walked a similar path. Be open to help from others. If someone says, "no" or they seem disinterested, move on to the next person. 

Inform

Finally, inform the medical provider about your medical trauma or anxiety. Don’t ever be afraid to show your true emotions to medical staff. If the feelings are too intense in the moment, you may have to go back later to have that conservation. Doctors' offices and hospitals often send out surveys after appointments. Take them! The feedback, positive or negative, could help the next person, or it could begin a dialogue that could improve your medical care. Another avenue would be contact the hospital or medical center's patient relations department. Doctors, physician's assistants, and other medical professionals are all in helping professions. They need the feedback to improve the ways in which they can help. 

Finally, trauma rewires the brain. I believe the psychological and mental burden is the hardest part of the craniofacial life. Your mental health and emotional reactions to people, places, and events in your environment can all be triggers. Be ready with your distress tolerance skills to keep you calm. Breathe! Breathe deeply from the abdomen engaging the diaphragm, and imagine breathing out the pain down into your legs and out the soles of your feet. Be patient you can get through it! 

Yes, it's unfortunate that sharing this with the people that care for us is our job. This part of our lives is truly exhausting. But the more we talk about it with the people that treat us and care for us, the closer we will get to trauma-informed care. Education and awareness raising is the only way — and sadly we and our allies are the only teachers!

Learn more about medical PTSD in our Youtube video library from Dr. Monheim-Janns or take a look at some of our educational overviews on maintaining good mental health