Accommodations 101: COVID-19 Edition

January Resources from our Student Support Network

Many undergraduate and graduate students who are at higher risk of COVID-19 have concerns about their education during the ongoing global pandemic. The Health Advocacy Summit has launched a support network and compiled resources for students with disabilities, including chronic illness and rare diseases.

This Guide was created by The Health Advocacy Summit’s High-Risk Student Support Network. Please note that various colleges and universities may offer different accommodations, and it is best to check with your Disability Services office about which accommodations and resources your school offers. 

For questions, comments, or to suggest/request any other resources, please contact Amy at amy@healthadvocacysummit.org. 

Know Your Rights

Under Section 504 of the Rehabilitation Act of 1973, The Americans With Disabilities Act of 1990, you have the right to equal access to higher education and reasonable accommodations in the classroom, online learning, tutoring, school programs, student-led organizations, and housing. In 2008, an amendment was added to broaden the interpretation of disability to cover those with 

• Chronic medical disabilities

• Mental health illnesses

• Chronic illnesses that are episodic or in remission

• Temporary disabilities, such as a broken leg or arm

Accommodations for disabilities such as chronic illness and rare disease can include (but are not limited to)...

• Priority enrollment: This would allow you to enroll in your classes at an earlier time, which could help you plan your academic schedule around your medication schedule and to find classes at a time that works best for your body.

• Extended time on exams and quizzes: This could allow you to “pause the clock” during an exam (for example, if you needed to use the bathroom during the exam) or to increase the time limit to finish the exam. Depending on your professor, you may be able to take the exam in your classroom or at your school’s Testing Center. In the event that you are experiencing symptoms and unable to take your exam on its scheduled day, you may be able to request to reschedule it to a later date.

  • During the COVID-19 pandemic and distance learning, this could also mean that you are able to stay on your virtual testing platform for an extended period of time.

• Extended/flexible deadlines on assignments: If you are experiencing symptoms, this can allow you to have a reasonable extension on class assignments (such as moving the due date). 

• Flexible attendance: For classes that have required attendance or participation, you may be allowed more flexibility in the number of lectures or discussions that you are allowed to miss, without this having a negative impact on your grade. If you are experiencing symptoms that prevent you from letting your professor know about you missing class ahead of time, this may also allow you the extra flexibility to 

  • During the COVID-19 pandemic and distance learning, this can include allowing students to turn off their camera during class or to participate via the chat box rather than verbally.

• Note-taking support and resources: Your school may offer student note-taking services in which you may be able to access class notes from a classmate. This is especially useful for instances in which you are unable to attend class or for classes that are not recorded.

• Housing accommodations: Depending on the types of housing that your school offers, you may be able to request a specific dorm or apartment-style. Some examples include a dorm set up with a private bathroom, a dorm with access to a kitchen, or an apartment with a single room. Note that housing accommodations often take longer to process, so it’s important to talk with your school’s Disability Support office as soon as possible.

• Dining accommodations: If you do live in university-owned housing, you may be able to qualify for a specific meal plan, access to a kitchen, or a separate food pantry (ex: for gluten-free food). Certain schools may also have an on-site dietitian or nutritionist that may be able to assist you with your specific needs.

• Mobility accommodations: Although this accommodation does vary based on school and your individual needs, some examples of this may include requesting for your class to be located in a building with elevators, on the ground floor, or a building with an accessible bathroom. Please note that these accommodations may look different during COVID-19.

• Transportation: Similar to mobility accommodations, these may vary. Some examples include your school offering a van/shuttle service to and from class and to be compensated for public transportation (for example, a school-issued bus pass).
  

For more information, check out these additional resources:

• 7 Things to Know About College Disability Services

• Types of College Accommodations and Services

• Online Learning Tips

• Online Learning Accessibility and Your Legal Rights

• Department of Education COVID-19 Resources for ALL Schools

• The Department of Education on Higher Education and COVID-19

• CDC Guidance on Higher Education

• Planning Steps for Patients and Families During the COVID-19 Crisis

The CCYAN officially introduces the 2021 fellows!

The Crohn’s and Colitis Young Adults Network (CCYAN) is an international fellowship program, through the Health Advocacy Summit, for young adults with inflammatory bowel diseases. The CCYAN is proud to introduce nine amazing fellows from five countries across the globe that are excited to represent & advocate for the young adult #IBD community!

How to Succeed in the Face of a Life-Altering Disease

First-hand advice on how to keep pushing through a chronic illness.

By Sneha Dave

My high-school experience was amazing and unforgettable. After living with ulcerative colitis for more than 12 years, the most valuable thing I learned is that absolutely anything is possible.

Some would say I am a success story, considering that after living most of my life with severe ulcerative colitis and resulting complications, I was able to graduate as a part of the top-20 of my class of 600. But these past four years in high school have been my choice to live like I didn't have ulcerative colitis. My "successes" and "failures" in high school have been driven by the idea that colitis would be a part of me, but I would not be a part of it.

My detailed story with ulcerative colitis can be found here.

Recently, I was selected as a Coca-Cola Scholar and an Eli Lilly Scholar, meaning my college experience is paid for. Behind this scholarship is an unforgettable journey of triumphs and defeats. I was told, when my major flare-up started in sixth grade, that each day would be new and that I would need to take it easier than my classmates. I didn't understand why at the time, but as my disease progressed, and as I started calling the hospital my home, it became apparent. Instead of letting my disease be a reason for me to get out of some assignments, I began to feel a sense of competitiveness with my disease – I would not let it slow me down. And so I didn't. Throughout high school, I would take tests the morning of a procedure that required me to remain on a liquid diet for 24 hours, and I would finish homework before I was called into procedures requiring anesthesia. "Why are you doing this to yourself?" my parents would ask, but it was a sort of need for me to prove that ulcerative colitis did not hold me captive. For me, graduating high school at the top of my class is not only an achievement, but also proof that ulcerative colitis did not keep me from my goals for so many years. Here is some advice I wish I had and what I have learned throughout high school.

Find your own way around, because you will have to be persistent to get opportunities.

When I came back from being severely ill, I faced a degree of unfair treatment my freshman year. I really wanted to become an advocate for individuals with chronic illnesses, specifically inflammatory bowel diseases, and to do that I thought I could go to my school as a starting point. When I kept getting denied due to my inability to be at school often, I knew that the only way for me to make a difference for individuals with chronic illnesses would be by myself. About three months after my colectomy surgery, as a freshman, I started the "Crohn's and Colitis Teen Times," now a nonprofit that serves individuals with chronic illnesses around the world. I sought out opportunities beyond my school, but what was unfortunate was that despite my explanation and my increasingly better resume, I was still not chosen for any opportunity without a fight. The point here is that oftentimes your chronic illness will seclude you from society, and it is up to you to build yourself and follow your passions.

Your illness cannot be your excuse.

In middle school, many of my teachers tried to make the workload a bit less strenuous due to my partial schooling and deteriorating health. In high school, however, everything started to count and I began my journey of working as hard as my peers. After all, I took the same Advanced Placement tests and standardized tests and had to get the same scores – even if I did not have the same amount of sleep or even if I was just a couple of weeks out from a major surgery. Most chronic illnesses are invisible, and with that it is more difficult to explain your condition and receive the same empathy as someone who is visibly sick.

Share your story.

I never spoke a word about my disease until my freshman year – my entire life my best friends were the only ones who knew I suffered from ulcerative colitis, but I only told them a fourth of what I actually went through. It is imperative to tell others what you are going through so that you are able to explain why you cannot participate in something or are turning in an assignment late – because you will undoubtedly receive those questions.

Stay resilient.

It is quite impossible to describe how many times my sickness tested my mental ability to keep pushing. I still remember when I returned home from my first major surgery: the removal of my entire large intestine. Coming home with an ileostomy bag, I experienced a huge physical adjustment, but almost a week after I returned I took finals that I had missed due to surgery. Looking back, I was crazy for taking those finals while recovering and on pain medications. Remain resilient, because those are times that will pass, but a slip-up in your performance will stay. With that being said, pay significant attention to your health.

Keep your health above your goals.

While it seems as though for much of my high school I didn't prioritize my health, I strongly suggest focusing on yourself before school. Some of the above advice may say the contrary, but truly pay attention to yourself before your tasks. The first step is fixing you, and I was lucky enough to have my parents constantly reminding me of this.

Stay passionate, focused and happy with what you have. Living with a chronic illness is difficult in a fast-paced society. Overcoming your obstacles with success just takes a little determination and grit to find yourself somewhere that was once unimaginable.

How to Live With Food Restrictions

Tips for avoiding off-limits foods your body can't tolerate. Even when your taste buds crave them.

By Sneha Dave

Going to the movies is excruciating – not a typical statement for a teenager to make. I can’t ever concentrate on the film, only the sights and sounds of others eating the favorite food I haven’t been able to consume in years: popcorn.

Restricting or cutting out certain foods can be extremely difficult for those of us whose bodies can’t tolerate them. Diagnosed with debilitating ulcerative colitis at age 6, I have learned to navigate a world of dietary minefields. But armed with these strategies, I have learned to combat cravings for things that could wreak havoc in my body.

If you or someone you know is struggling to avoid off-limits foods, here’s what works for me:

1. Find alternatives. After a grueling two weeks in the hospital, a nutritionist visited me at age 12 for a serious talk about my new dietary restrictions. Corn – in any shape or form – was out of the picture, as were many mouthwatering foods such as tacos, pizza and ice cream. The worst part? After reading nutrition labels, nearly everything on grocery store shelves seemed to have the very ingredients I couldn’t touch. So instead of eating those cheese puffs I loved (which had cornmeal) we searched around for a good replacement. Rice puffs, it turns out, taste very similar. It helps a lot to make small substitutions that still keep things “normal.”

2. Visit a health nutrition store. Not everything I used to eat can be replaced with a direct alternative. That’s why I’ve found it helpful to pick out foods I like that don’t cause issues and aren’t substitutions for something else. Many health food stores seem to cater to people like me who must avoid certain foods for health reasons, and tend to sell products with clearly labeled ingredients. It helps to be able to quickly rule out a food before falling in love with it.  

3. If you are going to a restaurant or a party, know your limits. I remember going to several parties and having to practically bite my tongue to avoid foods that looked so good but I knew would cause trouble. I still wanted to be social, and didn’t want to skip events just because of my limited diet. So instead, I found it helpful to eat before the events, which would lessen my cravings for foods my body would sorely regret. I did eat at the events, but picked things that were safe and in bite-size portions.  

4. Learn and understand your body. At times, I wanted so badly to stuff myself with all the popcorn and Mexican food my body could take. Even at a young age, I was forced to understand my body and learn the severe consequences certain foods could have on me. Food restrictions are a lifelong reality for me that change every so often. I know this and have suffered before from ignoring this reality. Today, at age 17, I know it’s important to trust yourself to make the right decisions no matter what situation you’re in, but to identify and avoid temptation triggers.

5. Know you’re not the only one. Being mentally strong is one of the toughest parts of living with food restrictions, especially for people with a long list of banned foods. But there are others out there who are facing the same challenges as you. Being able to connect and network with others is a huge step to being able to adapt successfully to a restricted diet.

6. See a professional. When my diet was at its most restrictive, it was difficult for me to even find online resources with useful guidance. Consulting with a dietitian or nutritionist who could help me plan meals for the week made all the difference, so that my parents and I didn’t have to spend all our time checking products for offending ingredients. The professional also made sure I was getting all the daily nutrients that I needed, which can be very tricky on a restrictive diet.

7. Stay away from dangerous foods. My family was extremely gracious in supporting me through all of my dietary adventures. They basically did the diet with me. This made it easy: “Red-alert” foods were not in my environment and thus cravings became significantly less. If your family or housemates are understandably unwilling to live without their favorite foods, then at least ask them to please keep them out of your sight.

Although food restrictions may be horrific to deal with, they certainly build psychological courage. Throughout my experience with many diets and food restrictions, I have found that with experience, conquering food cravings becomes easier. Over time, the foods that cause you trouble may change as well, so it’s worthwhile to revisit them periodically. You might once again be able to eat that beloved meal. 

Our International, Virtual Health Advocacy Summit is Almost Here!

Our Virtual Summit is happening on August 8th! While the pandemic has forced the Health Advocacy Summit to cancel all of our in-person summits for 2020, it has also allowed us to host this first-of-its-kind international, virtual event! Our virtual summit is unlike anything we've seen before and is especially important in maintaining peer connection, support, and finding resources during this pandemic. 

Those diagnosed with a chronic medical disability, as children or young adults, face a lifetime of illness. It is estimated that there are approximately 20 million young adults living with serious, lifelong diseases. The ongoing global pandemic has only served to increase the disease burden for this population, many of whom are fighting to survive and keep their heads above water. Now more than ever, young adult patients are in desperate need of support, information, and resources. That's why we're here!

Our Virtual Summit is a free, daylong event to connect and empower young adults (between 13 and 30) living with chronic and rare diseases. This year, we have the opportunity to bring patients together on an international scale and will feature some of the most powerful patient advocates across the country and beyond to speak on critical issues affecting this patient demographic.

Engage with us on social media during the Summit! What sessions are your favorite? Anything a speaker said that resonated with you? We want to hear from you! Use the hashtag #HAS2020 and tag us @healthadvocacysummit on Instagram and @HA_Summit on Twitter!

Happy Chronic Disease Day!!

Chronic Disease Day is tomorrow, July 10th! Chronic Disease Day is a day that brings together state and local governments, advocacy groups, and communities across the country to recognize and support the millions of Americans living with debilitating chronic diseases.

This day is especially important to us as we are an organization that represents and is composed of young adults living with chronic and rare diseases— an often overlooked subgroup within the chronic disease patient population.

The burden of chronic disease in adolescence is increasing as more chronically ill children survive beyond the age of 10. Now, conditions once seen only in young children are being seen beyond childhood and adolescence. Individuals diagnosed during or prior to young adulthood face a lifetime of illness, the impact of which has not received adequate attention. It is estimated that there are approximately 20 million young adults living with serious, lifelong conditions.

Limited Support for Patients Facing a Lifetime of Illness

• The financial burden of a lifelong illness is massive, yet there are very few reliable systems in place to support these patients, many of whom are left to their own devices as they fight to survive and keep their heads above water.

• Often, these patients struggle to find insurance <br>coverage that adequately meets the needs of serious, continuous illness. A report published by Harvard T.H. Chan School of Public Health states that approximately nine in ten seriously ill patients (91%) have health insurance coverage, but that “37% of these patients report having used up all or most of their savings dealing with their health and medical condition… and 23% report being unable to pay for basic necessities like food, heat, or housing.”

• A large portion of chronically ill persons live under the poverty line, trying to make do with what little they get from social security, a system which unfortunately keeps these individuals from establishing much of a savings or any other financial safeguards for their future. Furthermore, because of the unpredictable nature of their illness, many of those living with a chronic disease are unable to pursue career or higher education opportunities that would provide them with the financial independence and security they desperately need.

Chronic Disease Amidst a Global Pandemic

These are challenging times for all of us. For those living with a chronic disease, many of whom are immune-compromised, this time can be especially frightening and can make managing their health even more difficult. Yet, while these individuals are considered vulnerable and at a higher risk for serious illness from Covid-19, they are also a source of strength and wisdom for the rest of us as we try to adapt and cope with the changes caused by this global pandemic. Many of these individuals have been inadvertently prepared for this pandemic due to the nature of their chronic disease. Being isolated and figuring out how to function and stay in touch with the rest of the world from home, keeping an emergency stock of food and supplies, and adjusting to ever-changing conditions are norms for many individuals living with a chronic illness.

This year, our goal is to recognize the strength of the millions of disadvantaged chronically ill and disabled patients who are trying to navigate life—and this unprecedented pandemic—with a chronic medical disability. We also want to bring awareness and understanding to the population at-large and inspire everyone to be cautious and mindful of their decisions during this difficult time.

A HHT Survivor Story

By Sabrina Vera

My name is Sabrina Marie Vera, I’m a proud first-generation graduate of Pomona College, Puerto Rican woman, and survivor of Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic and deadly blood disease. My family and I suffer from HHT, which took the life of my older brother Robert 15 years ago. HHT causes malformed blood vessels throughout the body that cause sudden and extreme bleeding, both internally and externally, and can lead to brain hemorrhage, strokes, and heart failure. One of the first signs of HHT is nosebleeds. Even though some patients report never suffering from nosebleeds, I bleed from my nose at least twice a day and have been hospitalized in the past due to extreme blood loss. One in every 5,000 people has HHT, which is about 1.4 million people worldwide or 0.025% of the world’s population. My grandmother, mother, all of her siblings, my brother, cousins and I are all members of that 0.025% suffering from HHT, which never skips a generation. My family also suffers from HHT type one, the worst genetic mutation form of HHT. 

At least 40% of people with HHT have pulmonary arteriovenous malformations (AVMs), which must be coiled to keep them from growing and erupting. Earlier this year, I was on a plane home from Puerto Rico, and while the plane was landing and the pressure was changing, I felt a very sharp pain in my lungs. Days passed and I felt like I couldn’t breathe, my heart was racing, and my chest plate was swollen and sore. I went to the doctor thinking it was anxiety or, even worse, possible breast cancer, but he immediately sent me to get my lungs scanned. Deep down, I had a feeling it was my AVMs, but I was a bit in denial out of fear of surgery. That same night my doctor called me and told me I needed lung surgery immediately. I was about three days away from flying back to Pomona to start my final semester of college, so I hesitated. “Sabrina, if we wait on doing this surgery, you won’t be walking across the stage this Spring.” I was told I had an AVM with a feeding artery and three AVMs that were approaching 10 mm. For reference, AVMs are flagged for surgery at about 3 mm. At that moment, I couldn’t help but cry. I wanted to put my education before my health and my life, which is something I think a lot of students with disabilities, especially first-gen, low-income students of color, tend to do. Two days later I headed into surgery. The procedure calls for patients to be partially awake to breathe in when they coil the AVMs. I felt them moving around inside the depths of my chest, it’s a feeling I will never forget. Once I came through, I immediately cried, vomited, and bled from my nose while my sister held me. It was really overwhelming; I felt absolutely terrible. But, the surgery was successful, and for that, I am eternally grateful. 

My brother Robert passed away from a ruptured cerebral AVM. I remember how his brain scan lit up like a Christmas tree, each dot representing an AVM scattered throughout sensitive parts of his developing brain, from his memory to his motor skills. A surgery for him was extremely risky at the time due to a lack of research and resources. My cousin Pricilla who also has AVMs in her brain underwent the surgery and came out of it confined to a wheelchair and partially blind. So, of course, my brother, a teenage boy who wanted to live life to the fullest, was hesitant. Unfortunately, Robert spent the last months of his life in immense pain, from brutal headaches to gut-wrenching seizures every day, until June 9th, 2005, when he passed away. 

Three years after Robert died, doctors found AVMs in my brain and liver. I remember the silence in the room when the doctor told my mother about my brain, followed by her crying at the possibility of reliving the same nightmare with me. However, I have been extremely blessed. My cerebral AVMs, unlike my brother’s, are growing at a rate that I can monitor. When I scanned my lungs this year, I also scanned my brain. Two of my AVMs are still small, and one is about 6 mm. As most people with rare diseases can attest, my doctor was unsure what to do because “it’s just not that common,” which is true. Cerebral AVMs affect less than 1% of the world’s population. Doctors are unsure if it’s worth coiling my larger cerebral AVM because of its location. “I worry about that AVM because it’s growing in your frontal lobe, right around the area that is most responsible for controlling your personality.” I couldn’t help but let out a cynical giggle. The very core of my personality - being a survivor and advocate for HHT - is now being threatened by HHT. Life is full of many moments of comical irony, the type of irony that makes every deep breath a bit sweeter. 

I have been feeling so much better since my surgery, and I am keeping close tabs on my brain. Sure, I bleed from my nose every day and have had moments when I’m eating and bam! - blood in my soup! Or on my favorite shirt. Or even sometimes on my homework. Every red drop of blood and bloodstain is simply another potent reminder of HHT, the hidden killer that makes appearances that are oftentimes subtle. Maybe in the form of Telangiectasia (small red spots) on your tongue. But sometimes, HHT is not subtle at all. HHT is more than nosebleeds; it’s a brain scan that leaves your mother in somber shock, it’s the news from the ER that your seventeen-year-old son didn’t make it, it’s the sobering reality that you may not be able to have kids. Sometimes, it’s nothing at all: 90% of people with HHT are undiagnosed. I’ve learned that’s sort of the calling card of rare diseases: we don’t know what to expect, there’s simply not enough information and oftentimes patients are left in the dark. It usually takes something tragic to catalyze concrete change for patients. After my brother’s death, there were HHT conferences held in his name, an abundance of research was conducted, they improved the surgical procedures for coiling all organs, and June was named the national HHT Awareness month. We’ve come a long way as a community of blood sisters and brothers united by common occurrences like going through a box of tissues in five days. But, as they say in the community of people with a rare disease: alone we are rare, but together, we are strong.

Rachael Holmes is leading our peer-support meeting for young adult patients!

June 11: Rachael Holmes

Actor & Advocate

Leading our virtual meeting this Thursday at 7 p.m. ET is actress and advocate, Rachael Holmes! ♥️🎬 Rachael holds an MFA from New York University. She joined the Actors Equity Association (AEA) in 1998 and the Screen Actors Guild - American Federation of Television and Radio Artists (SAG-AFTRA) in 2004. On top of being an actor, she is a Professional Development Specialist and Diversity, Inclusion, Equity, and Anti-Racist Champion and has worked heavily in Silicon Valley.

Chronically ill and injured for most of her life, some of her artistic credits include Maureen in Marvel's Wolverine: The Lost Trail, Night Call, Amazon's Mad Dogs, ABC's Chasing Life, Instinct, Mysteries of Laura, The Good Wife, Dirt, national commercials, and voice-overs. You can learn more about Rachael and her work at rachaelholmes.com.

Keep High-Risk Students Safe!

Many students with chronic illnesses are concerned about the upcoming fall 2020 semester due to the ongoing pandemic. Between now and July, numerous colleges and universities are publishing their opening plans for the fall 2020 academic year.

We developed a campaign with resources for students with chronic medical disabilities to help them navigate school in the age of Covid-19! Students should not feel forced to choose between their education and personal safety. We strongly encourage schools to listen to the voices of students with chronic and rare illnesses and consider these individuals as they make plans for the upcoming school year. Email us at college@healthadvocacysummit.org with any questions!

Our Commitment to Anti-racism

We are collectively releasing a statement on behalf of the Health Advocacy Summit and the Crohn’s and Colitis Young Adults Network. This is about George Floyd, Breonna Taylor, Ahmaud Arbery, and countless others. This is also about checking ourselves in our workplace, home environment, and our own assumptions.

Health Advocacy Summit and its program Crohn’s and Colitis Young Adults Network are in strong opposition to the persistent racism and inequity that has and is plaguing our society at every level. We are disheartened by the continuing challenges that Black Americans face within society. We are here and we will speak up at every opportunity to remove systematic barriers that have gone ignored for too long. We as an organization recognize our deficits and will be putting our best effort with our resources to ensure we are reaching the most marginalized within our community. Racism at its core is a public health crisis. We cannot hope for equity in public health or the chronic illness community before racial injustice is proactively addressed.

We are led by the next generation. In that vein, we will not sit on the sidelines on issues that affect those in our community, especially within the medical system. We are envisioning the future we see through our gradual progress within healthcare. We hope that you will do the same to fight for each other, with each other. Black children have a 500 percent higher death rate from asthma compared to white children (epa.gov). Inequities don’t stop here - there are known disparities to access treatment and diagnosis for diabetes, HIV, mental health, just to name a few. Racial bias is apparent within the healthcare system with massive issues with apathy and poor communication from health professionals. We can empower those facing systematic societal barriers by committing ourselves to ensure that we are addressing the most marginalized. In the coming weeks, we will release a health equity statement revealing what we should be doing as community members to better support the most marginalized within healthcare. What we want you to know is that we care and we will do everything we can to support, empower, and rise up when our community needs it the most. 

Let’s get uncomfortable and real with ourselves. There is no more important time and we need every one of you to speak out and fight for each other. 

In solidarity, 

Health Advocacy Summit and Crohn’s and Colitis Young Adults Network

Happy World IBD Day from the CCYAN Fellows!

It's Ankylosing Spondylitis Awareness Month!

“Living with Ankylosing Spondylitis/Axial Spondyloarthritis is a special kind of life. It's a common disease but so many have never heard of it. I'm confronted with defining and explaining my condition every time I introduce it, which takes considerable energy. Spondyloarthritis Awareness Month every May is an opportunity to educate people about a systemic disease that impacts 2.7 million Americans (including many young people); often causes debilitating chronic low back pain; and is vastly misunderstood by many healthcare providers, leading to misdiagnoses and long delays in final correct diagnosis and treatment.”

This is a quote from our friend, former Summit speaker, and award-winning advocate, Charis Hill. Charis is a professionally disabled writer, activist, speaker, and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety, and Post-Traumatic Stress Disorder. They live with three cats and lots of plants in a falling-apart house bought while living in extreme poverty. Thank you, Charis, for being the unstoppable advocate that you are! 💙

Two-week Virtual Storytelling Workshop for Young Adult Living With a Chronic or Rare Disease!

MAY 14 & 21: Ali Hardy

Actor & Playwright

Storytelling workshop this Thursday led by Ali Hardy! Our next two virtual meetings will be dedicated to this workshop and learning how to craft your personal narrative. 👩🏻‍💻📝 These meetings are on Thursday of each week at 7pm EST. Send us a message if you’d like to join and keep reading to learn more about Ali’s own experience below!

Ali is an actor, playwright, and chronic illness advocate. During her junior year of high school she contracted the mono virus. Within a few months she began having Hemiplegic Migraines on a daily basis and had to finish high school from home. After nearly six years bed ridden from multiple chronic illnesses, she moved to NYC to attend the New York Conservatory for Dramatic Arts.

During her second year she was diagnosed with Antiphospholipid Syndrome and spent much of the year in and out of the hospital. Two days after graduating, Ali had to begin treatment full time to manage her diseases. To cope with her declining health, she began writing plays based on her experience as a patient.

The following summer she directed and produced her first original one act play. Since then she has created multiple plays about life with chronic illness, including Grace and Dennis, the first play to feature a character with Hemiplegic Migraine.

This Week's Virtual Peer-Support Meeting for Young Adult Patients will be led by Nitika Chopra!

April 30: Nitika Chopra

Founder of Chronicon

Nitika Chopra will be leading a discussion on advocacy work across different mediums at our virtual meeting this Thursday!

Nitika is the founder of Chronicon, a media and events company, dedicated to elevating the lives of those living with a chronic illness. Nitika was diagnosed with psoriasis at the age of 10 and psoriatic arthritis at the age of 19 and lived over 17 years of her life being defined by her conditions.

In 2010 she decided to take all of the lessons her health journey had taught her and use it to help others with the creation of her online magazine Bella Life. Since the start of her entrepreneurial journey Nitika has hosted her own TV talk show on Z Living called Naturally Beautiful, hosted over 40 events with hundreds of guests in attendance and has created dynamic partnerships with over 150 brands in the wellness space.

After 10 years in event creation, Nitika launched Chronicon in the fall of 2019, focused on those living with a chronic illness. The event sold out, had over 2,000 livestream viewers, high-level brand sponsors, and has plans to expand in 2020. Follow her for daily inspiration @nitikachopra + @chroniconofficial.

Hannah Olson of Chronically Capable is Leading This Week's Virtual Peer-Support Meeting!

April 16: Hannah Olson

Patient Advocate & Founder of Chronically Capable

This Thursday’s virtual meeting will be led by patient advocate and founder of Chronically Capable! The young founder from Massachusetts currently resides in Austin, Texas.

During her sophomore year at Boston University, she was diagnosed with chronic Lyme disease which nearly derailed her early career. Rather than accepting this fate, she created a company last year called Chronically Capable which exists to help people with chronic illnesses and disabilities to find flexible work opportunities. Her ultimate goal is to eliminate the unemployment gap between disabled and abled Americans. In addition to discussing her experience creating Chronically Capable, Hannah will be leading a discussion on ways to be proactive while job searching during this pandemic.

Spaces are still open for this meeting! If you’d like to join, send us a message at virtual@healthadvocacysummit.org!