Category: Uncategorized

Calling All JA Kids & Parents!

Posted on by Grayson

I found this gig though Savvy Cooperative.

A company is looking for parents/guardians of children and teens (age 10-17) with psoriasis, juvenile arthritis, or related rheumatic conditions to accompany their child to a one-time, 45-min, in-person usability study testing autoinjectors happening in January/February at various locations across the country. Participants will be asked to handle an autoinjector and simulate an injection into a pad, participants will NOT actually perform an injection on themselves. (Note: this study is not a clinical study).

**PLEASE READ REQUIREMENTS BELOW**

  • Parent/guardian of a child ages 10-17 with a clinical diagnosis of one or more of the following conditions (NOTE: preference may be given to the first three diagnoses):
    • Psoriasis
    • Juvenile psoriatic arthritis
    • Enthesitis-related arthritis
    • Polyarticular JIA
    • Systemic JIA
    • Oligoarticular JIA (formerly pauciarticular JIA)
    • Psoriatic arthritis
    • Ankylosing spondylitis
    • Rheumatoid-factor-positive polyarthritis
    • Rheumatoid-factor-negative polyarthritis
    • Undifferentiated arthritis
    • Juvenile systemic lupus erythematosus
    • Juvenile lupus nephritis
    • Juvenile systemic sclerosis
    • Other subtypes may apply
      (Proof of diagnosis will be required to participate)
  • Able to travel to one of the cities listed below
    (additional travel reimbursement not available)
  • Fluent English speaker, but does not need to be the primary language
  • U.S. citizen

Details:

  • Usability testing in-person (~ 45-minutes) in
    • Charlotte
    • Cincinnati
    • Columbus
    • New York City
    • Philadelphia
    • Baltimore
    • San Jose
    • Seattle
    • Portland

This will take place between January/February 2020 (specific dates dependent on location).

Those who participate will receive $200!

To learn more, click here.

Study Opportunity

Posted on by Grayson

People diagnosed with Autoimmune or Autoinflammatory diseases that have arthritis as a major clinical component (AiArthritis), often face challenges that lead to delays in diagnosis, misdiagnosis, re-diagnosis and multiple diagnoses. This can cause treatment complications – or “hard-to-treat” disease, resulting in poorer outcomes and inflated long-term healthcare costs.

Some of these diseases, like Adult-Onset Still’s Disease (AOSD), are considered “rare”, while others, like Rheumatoid Arthritis (RA), are considered more common; however, in our internal research, and through continued dialogue with a global patient community, we have identified that many patients do not match the classic disease descriptions as outlined in mainstream publications (“typical” versus “atypical”). Therefore, in addition to delays in detection and diagnosis, we believe it is important to further explore relationships between “rare” versus “common” diseases, as well as “typical” versus “atypical” presentation, to explore how these subsets affect disease progression and outcomes and why some diseases may be harder to treat than others.

This research is the final part of a bigger collaborative project between Purple Playas Foundation, IFAA, and the American Autoimmune Related Disease Association (AARDA), called Knowledge is EmPOWERment. This last initiative is to explore some rare, “atypical”, and hard-to-treat autoimmune and autoinflammatory diseases with arthritis as a major clinical component to identify patterns as to why some diseases are harder to treat than others. Those who do have hard-to-treat disease often experience poorer outcomes, higher healthcare costs, and may exhaust existing treatment options.

The voice of those living with these diseases is POWERful; sharing your experiences will help us develop materials educational materials we hope will aid in early detection, diagnosis, and access to care for the atypical, hard-to-treat population. The results of this research will be used to further our work to advocate in favor of early detection, diagnosis, and access to care.

IFAA is an international nonprofit organization whose mission is to utilize the voices of those affected by AiArthritis diseases to impact education, advocacy, and research. We do this through primarily through conversations that help us identify the most pressing issues that need immediate resolution. 
To participate in this survey you must be:

1. At least 18 years of age.
2. A person OR the parent/guardian of a juvenile person who is currently diagnosed with one or more of the following hard-to-treat autoimmune or autoinflammatory diseases that include arthritis as a major clinical component (AiArthritis).  We are focusing on these diseases at this time because they are most closely related in symptom and clinical feature onset, progression, and treatment protocol.Qualifying AiArthritis diseases include:

  • Rheumatoid Arthritis (RA)
  • Adult Onset Still’s Disease (AOSD)
  • Juvenile Idiopathic Arthritis (JIA)
  • Systemic Juvenile Idiopathic Arthritis (sJIA)
  • HIDS (hyper-IgD syndrome, a mevalonate kinase deficiency)

3. Other co-morbidities, in addition to at least one of the Qualifying AiArthritis diseases, are also permitted.
4. Diagnosis was confirmed by a rheumatologist.  We understand you may not have initially been diagnosed by a rheumatologist (for example, you may have been diagnosed by an infectious disease doctor), but may have eventually been referred to see one. Since this study covers such a broad number of people and subcategories, and possible specialists that could be involved, in order to properly measure our response to treatment results, we are going to focus these comparisons on those who eventually saw a rheumatologist. 
5. Be able to read and write in English.
6. Global participation welcome.

Exclusions

  • Those who do not have a current diagnosis of at least one Qualifying AiArthritis diseases mentioned in the inclusion list.
  • Those who never had their diagnosis confirmed by a rheumatologist.
  • Those who are not at least 18 years of age.

To participate, click here.

Rheumatology Leaders Applaud Updates to Evaluation and Management Codes in CMS 2020 Physician Fee Schedule Proposed Rule

Posted on by Grayson

The following is a press release from earlier this week (7/30):

The American College of Rheumatology (ACR) today applauded the Centers for Medicare & Medicaid Services (CMS) for including proposed reimbursement changes to evaluation and management (E/M) codes in its CY 2020 Physician Fee Schedule Proposed Rule. If finalized, the proposal would increase Medicare reimbursement for time-intensive healthcare services provided by cognitive specialists such as rheumatologists. These services include examinations, disease diagnosis, risk assessments, and care coordination.

“The ACR applauds CMS for recommending long-needed updates to E/M codes in its CY 2020 Physician Fee Schedule proposed rule,” said Paula Marchetta, MD, MBA, president of the ACR. “Rheumatologists and other cognitive specialists should be adequately reimbursed for the time-intensive, high-value services they provide to Medicare beneficiaries. The proposed changes would more closely align reimbursement for E/M services with the time and expertise they require, and will help ensure millions of Medicare beneficiaries continue to receive these vital healthcare services. We hope to continue to work with CMS to ensure the expertise provided by rheumatologists and other cognitive specialists is appropriately reimbursed.”

Healthcare services billed under E/M codes – which include examinations, disease diagnosis, risk assessments, and care coordination – are grossly under-compensated by Medicare, according to a 2018 report from the Medicare Payment and Advisory Commission (MedPAC).

The CMS proposal aligns with recommendations set forth by the American Medical Association in collaboration with a diverse group of professional societies representing cognitive specialties, including the ACR. The ACR also engaged with the administration through meetings, phone calls, and public comments to provide the perspective of rheumatologists.

“We thank CMS for giving rheumatology leaders ample opportunities to interact with the agency on this issue and look forward to providing further feedback in written comments,” said Dr. Marchetta.

MisdiagKNOWsis Chat May 3rd at 3 pm ET

Posted on by Grayson

Did you know the average patient with an autoimmune condition waits for FIVE YEARS for an accurate diagnosis? There are people who wait far longer, too – that’s just an average.

My pals at Clara Health and Enzyvant are hosting a Twitter chat to talk about misdiagnosis. You may remember them from the Farber Disease post.

Want to talk about misdiagnosis? You can preview the chat questions here. Make sure to join on Twitter using the tag #MisdiagKNOWsis at 3 pm ET on May 3rd.

A Long History of The Mighty Refusing to Listen to Neurodivergent Folx

Posted on by Grayson
This post is a collection of three posts that were originally on my Medium page. I’m relisting them here. Part 1 is from March 29, 2017. Part 2 is from March 30, 2017. Part 3 is from January 12, 2018. Parts 1 and 2 are still up on Medium. 

 

Part 1: An Open Letter to The Mighty on Their Continued Support of The Hate Group Autism Speaks

I recently saw that The Mighty is partnering with Autism Speaks (AS). We need to have a conversation about this and I sincerely hope that you pass it along to people further up as well.

 

I realize that The Mighty gets a lot of traffic through parents of autistic children. However, I also know that the chronic illness world brings in a lot of traffic as well. I share at least half a dozen articles from The Mighty on my various social media accounts which I know generates a good amount of traffic as well. I have been happy to write occasionally while sharing when I can.

 

However, as someone who *is* neurodivergent in addition to being a writer and having written for The Mighty, this partnering with AS is concerning and, frankly, disgusting.

 

Autistic children are referred to as burdens constantly and consistently. The focus with AS is ‘fixing’ the child and relieving the burden of being a parent with a disabled child instead of on helping the child grow. True, they may not be focused on a ‘cure’ anymore, but they aren’t exactly welcoming their children with open arms as parents should.

 

AS also refuses to do much of anything to help with autistic young adults and adults. How much can they be assisting people living with autism when they don’t even help patients themselves past the time when we receive the most support?

 

I’ve included links below by people who are *actually* autistic, many parents, and other organizations that discuss the dangers of AS. Some of these articles are slightly outdated, sure, but there are plenty that address the more recent developments as well — sharing how this doesn’t change much at all. (Links sent can be found in this masterpost of issues with Autism $peaks.)

 

I hope that you will pass this along. As a writer, I have many pieces I’d love to continue contributing to The Mighty. However, I will no longer be doing so when the site partners with an organization that erases the humanity of so many people. I am not the only writer involved with The Mighty that feels this way.

 

Know that a continued relationship with AS will continue to damage The Mighty’s reputation and relationships with influential bloggers and writers like myself — writers that have stuck with The Mighty despite an inability to pay us. We have stuck by the site through a few PR nightmares that you’ve been able to bounce back from. However, we cannot and won’t continue to support y’all when you partner with organizations like AS that preach eugenics ideas while working with Neo-Nazi groups.

 

It is a PR nightmare for those of us who have our own reputations at stake and who would not be able to bounce back like The Mighty has and, from an ethical standpoint, it is wrong to continue support of AS.

 

The Mighty articles I currently have scheduled to post (on social media) will go up. Any others will not be featured on my various social media accounts until/unless The Mighty ceases its support of this organization. I would also ask that you remove my articles from the site if there will be a continued partnership with AS.

 

Thank you for your time,

 

Kirsten

 

Part 2: The Response

Yesterday, I wrote a letter to The Mighty about their support of the hate group Autism Speaks. This was their response.

Hi Kirsten,

Thank you so much for reaching out about your concerns. Unfortunately, there is some misinformation circulating regarding the nature of our relationship with Autism Speaks.
The Mighty has a non-profit partnership program which takes a variety of forms. The purpose of the partner program (which does not involve money) is to bring free resources to people through stories on our site. We partner with hundreds of organizations, including but not limited to the following autism-related organizations: National Autism Association, Sesame Street, The Art of Autism, ACT! Today, Geek Club Books, Asperger Experts, AutismTalk, The Color of Autism, Global Autism Project, Autism Speaks, and STAR Institute for SPD.

We do understand the concerns about Autism Speaks. We added them to our partnership program only after they announced the change to their mission in the fall of last year. As a company, we believe autistic people and their families need acceptance and understanding, and we do not support curing or eradicating autism.

We do believe a crucial element of our partnership program is that our site and community helps the partners’ audiences. By us sharing more content by autistic writers and autism community advocates, it can help educate and change perspectives for the better both within and beyond our Mighty community. We are now one of the largest platforms for autistic writers, and sharing our writers’ stories with Autism Speaks can help their readers who may still be struggling to understand and accept autism.
All of our partners have a “partner box” (we sometimes refer to it as a “module”), which can appear at the bottom of stories and offers links and resources on the partner’s website. We generally add one of these boxes to stories based on the content, but writers who are associated with a partner as employees, volunteers, or supporters can choose to have that box displayed below their stories. Autism Speaks’ partner box is only supposed to be used when a contributor has expressed support of the organization — we do have a number of autistic writers who are affiliated with them. However, an oversight led to the box being added to an autistic writer who does not want to be affiliated with Autism Speaks. When this individual contacted us, we immediately removed the partner box and apologized. We want to assure you we will work harder to make sure contributors are always comfortable with the partner organizations in their stories.

We are open to feedback regarding our partnership program and would especially like to add additional partners in the autism space that you, our writers and readers, support. So if you are part of an organization or can recommend one, please let us know!
Our health and disability community is very diverse, and opinions differ on important issues. We do evaluate our partnerships periodically, and we never compromise our editorial standards for a partner. We actively work to fight ableism and content that disparages the disability community. We are committed to sharing the voices of autistic writers and the diverse voices of the larger disability and health community.

We hope this helps to alleviate your concerns.
— The Mighty Staff

Guess what? It doesn’t.

 

They have indeed compromised standards to include Autism Speaks as a partner.

 

Autism Speaks has supported TORTURE as a means to a CURE for Autism. They consistently support anti-vax ideals. And they’re supported by NEO-FUCKING-NAZIS.

 

My response:

 

I appreciate your response. My concern was not that there was any financial benefit, but that The Mighty is legitimizing AS as an organization — an organization with a history of legitimizing literal torture, speaking over people who are actually autistic, and promising things for publicity’s sake without any intent of following through.

 

You say sharing these stories with AS may help them understand. Unfortunately, autistic people and organizations have been doing this since AS started. AS does not care and does not understand. They are using The Mighty to legitimize their place as a ‘charity’ and to try to change how people see them. Until they have actually made changes, this is hurting you and your readers more than it’s helping them.

 

Not much has changed within AS since the changes you’ve spoken of. Regardless, their history of supporting torture of autistic people as a means to finding a cure is barbaric and I’m surprised that The Mighty has not taken these things into account.

 

Again, I will point you to various articles and ask that you actually read them this time as it’s clear you did not from your response. I would hope you’d have more respect for your supporters and writers than to simply send back a form letter and forgo reading the links I included. I put this masterpost of pieces against AS together last night and will be pulling articles from it.

 

Autistic people across the internet are up in arms over this partnership. Yes, as I already did before your response, they understand this isn’t financial, etc. Marginalized people — in this case, autistic and neurodivergent people — are speaking up and calling for a change here. If your goal is truly to provide an intersectional and safe place, you’ll start to listen. Otherwise, you’re losing readers and supporters by the minute.

 

Want to support Actually Autistic organizations? Here are a bunch that aren’t ableist in nature and *actually* include autistic people on their boards, etc (unlike AS):

 

  • The Autistic Self Advocacy Network
  • The Autism National Committee
  • Autism Network International
  • Autism Women’s Network
  • TASH
  • ADAPT
  • American Association of People with Disabilities
  • APSE
  • National Council on Independent Living
  • National Youth Leadership Network
  • Academic Autism Spectrum Partnership in Research and Education (AASPIRE)
  • HSC Foundation
  • Self Advocates Becoming Empowered

 

I urge you to check your social media mentions because, as this gets out more and more, people are extremely upset and swearing y’all off as a resource. This is going to lead to a lack of writers because of people like myself leaving, too. You’re associating yourselves — and, by association, your writers — with an ableist hate group created for parents (not autistics) that has the support of eugenicists and white supremacists. I hope that you can see why this is a bad look.

 

Kirsten

 

I never received a response.

 

Part 3: The Facebook-ening

 
The editor involved in this post filed a DMCA and has been harassing me across the internet. Due to that, the following has been highly edited as of Feb 15, 2019.

 

A dear friend recently asked on Facebook for an update about The Mighty as someone there wanted to interview them — were they still problematic AF, etc. I commented and pointed out that they still partner with Autism Speaks which has a long history of existing as a hate group. I also shared how TM refused to listen to concerns and “basically pulled ‘free speech’ crap on anyone who said this [partnership with A$] was bad.”

 

Some of you may remember that, last year, I shared an email I wrote to The Mighty on this partnership as well as their response. I asked a number of questions, shared sources, and asked for my articles to be removed from The Mighty… none of which happened. I received no further replies.

 

Said friend was grateful for the information and formally declined to participate with TM. As it turns out, an editor for TM is one of their FB friends.

 

Cue the following interaction.

 

The editor asserted that, since a few autistic authors write for TM under the A$ label, it’s unfair to shirk the organization. They also did not seem to grasp that TM’s relationship with A$ – even supposedly without financial support – legitimizes the existence of A$ and promotes it as a safe organization when it is not.

 

My reply:

 

Despite the outcry of many of us — including those of us who have asked for our articles to be removed from The Mighty in correlation to partnerships with A$ (which has not happened) — there is still a partnership with A$ which is an organization that has openly supported torture for those of us who are neurodivergent. I’m not sure why any disability organization would EVER feel comfortable having any sort of link to them.

The Mighty would still have someone who writes on these topics [sex and disability] if they took concerns that I shared seriously. I’ve asked several times for my articles to be taken down from your site due to this unholy partnership, and I get no reply much less action taken on my requests.

There is outcry among most disabled people about this and yet TM refuses to acknowledge this, save in letters to those of us who complain (whose follow-up emails — like mine — get ignored).

Furthermore, it’s condescending to claim that those of us who are upset and frustrated are spouting misinformation. We know the situation — it’s still horrendous. Why? Any organization that ignores writers’ wishes, blocks them from groups, refuses to pay them despite making money, and downplays these issues isn’t working for *justice* for disabled people. Period.

My friend pointed out that, regardless of other concerns, they deserve to be paid for their time and expertise (and rightfully so). Said friend — who previously had pieces on The Mighty — asked for their articles to be removed as well. The Mighty not only lost one writer (that they didn’t really have), but two — and likely more.

 

The editor claimed that disability activists won’t give TM a chance because of their past actions, that we should be giving them more of a chance because of how they’ve supposedly changed.

 

I shared that there is misinformation out there about any and every site. In my opinion, however, the most concerning stuff is what’s true — and how companies handle that truth. Leaders within disability and chronic illness circles tend to stick together and share interactions and concerns they’ve had. I know we’re not the first two people to ask for our pieces to be removed over this specific issue — and I have a feeling we won’t be the last.

 

Still, there seemed to be an inability to understand how affirming A$ as an organization was a dangerous thing.

 

When I pointed out A$ is still shit, the editor claimed the small changes A$ made – changes that are really in name only – they pulled out some amazing apologetics despite not supporting A$. Again, I was told we’re supposed to give organizations a break when they’ve continually supported harm, torture, and eugenics.

 

I pointed out something that should be obvious:

 

Despite changing their mission statement, they haven’t actually changed at all and continue to promote harmful rhetoric that everyone in the disability community should be afraid of and angry about. I’m not sure why people think not explicitly stating that they want XYZ doesn’t mean they won’t still participate. Trump isn’t a Nazi explicitly and he still acts like one.

PP has problems — but they also acknowledge them and work on them. A$ and TM seem to refuse to hear any dissenting opinions. That’s not how to run a successful organization, but what do I know? I just run my own business, have a side gig with a major EHR company, and work with major organizations.

If y’all checked your emails and actually read dissenting ones, you’d have heard this last April from many of us.

 

This editor stated something akin to the fact that me disapproving of TM’s unwavering support of a hateful eugenicist group is like to throwing a baby out with the bath water.

 

Jesus fucking Christ. What a shitshow.

 

After raising a stink, they finally removed my pieces from their site.

 

I had to continue asserting my boundaries and stating I was done with having this conversation several times.

 

Exhausting.

 

They continued to stalk my social media pages and sites to find new ways to threaten my ability to make a living, too, so that’s fun.

 

What went wrong here?

 

  1. Your organization should be accessible and willing to have a dialogue with writers. You should not be ignoring writers who share concerns about partnerships. A partnership with A$ in this context legitimizes it as an organization rather than a hate group.
  2. Don’t play kumbaya. Disability rights/justice peeps aren’t having it. My existence isn’t up for debate, and neither is my humanity. I shouldn’t have to preach to another disabled person essentially from a pulpit about why this connection with A$ is dangerous.
  3. If you’re FB friends with someone and you’re trying to persuade them to do something — and telling them they should message you to talk more about it — you should be the one messaging them in the first place. You don’t make this a comment on an open post. This is especially true if others commenting have shared their disdain for your organization or company.
  4. Respect boundaries. Period.

 

There is so much wrong with this interaction and these two organizations. Honestly, I’m writing this as comments keep happening, so I haven’t had time to sit with it.

 

I will say this, though.

 

I don’t need to be fixed. Honestly? I don’t want to be. There’s no way I would ever want to be abled — that’s not who I am. I would miss out on the amazing friendships and chosen family that I only have because of being chronically amazing. I would certainly love less pain. I would adore not having some recurring acute things pop up, like frozen shoulder. I want to make headway in my health and fitness. I’d go gaga for sitting up for three hours without going numb and needing to nap. Hell, I’d take being on less fucking medication.

 

Still, I wouldn’t be ‘me’ without what I’ve gone through. I certainly wouldn’t be the same without my light limp, PTSD hypervigilance (which helps as much as it hinders), and more.

 

I do not want a cure. I don’t need to be cured. My kind don’t need to be erased. We need a lot of things, but not erasure:

 

  • accessibility
  • a better medical system
  • a government that doesn’t love eugenics and white cishet abled neurotypical supremacy
  • mental health care
  • mass transit systems that don’t fucking suck
  • a guaranteed national income
  • captions, sign language, and CAR-T
  • empathy *gasp*
  • privacy
  • people to believe us at our word

 

Most of all? We need freedom, respect, and justice. None of these things will be found at The Mighty, Autism Speaks, or other ‘disability’ organizations that refused to listen to disability justice activists.

 

Looking for more about how The Mighty sucks?

 

 

Legit Places to Donate This Holiday Season

Posted on by Grayson
With the holidays upon us, I wanted to take a moment to highlight some of the amazing organizations that I love and support as well as individuals to consider donating to. Many organizations like the Salvation Army treat LGBT+ people terribly, even kicking people out of shelters because they’re transgender. Others, like the American Red Cross, don’t work effectively and waste millions of donated dollars each year.

 

I recently discovered that Eventbrite has tools to help make fundraising a little easier. So if you’re planning events for any organizations, check out their non-profit fundraising tool.

 

If you’re looking for legitimate organizations to donate to or fundraise for, read on!

 

Organizations

LGBT+ and Sex Ed

The Native Youth Sexual Health Network (NYSHN) is an organization by and for Indigenous youth that works across issues of sexual and reproductive health, rights and justice throughout the United States and Canada.

In the quaint town of Pawtucket, Rhode Island sits a building with a giant walk-through vulva. The Center for Sexual Pleasure and Health works tirelessly to provide education to everyone, including continuing education for people like myself.

Heart Women and Girls is one of my favorite organizations. They focus on sexual health and education for femmes within Muslim spaces. Providing culturally-sensitive health information is something that is vastly overlooked and badly needed – and Heart does that. Donate and help them on their path to fix the world.

The Matthew Shepard Foundation came about after Matt’s brutal murder in 1998. As a baby queer at the time, I’ve written about how Matt’s story continues to push me to fight for all of us. The Foundation continues to push for better laws against hate crimes, especially for the LGBT+ community. You can donate to them here.

TSER – Trans Student Educational Resources – is a youth-led organization dedicated to transforming the educational environment for trans and gender nonconforming students through advocacy and empowerment. In addition to our focus on creating a more trans-friendly education system, our mission is to educate the public and teach trans activists how to be effective organizers. Please consider donating to help further their mission.

Founded in 2003 by trans activists, the National Center for Transgender Equality provides a powerful transgender advocacy presence in Washington, DC. After the many setbacks our community has seen this year – and the ones we fear are coming – it’s important to continue supporting their work and affirming our support for them.

The Sylvia Rivera Law Project (SRLP) works to guarantee that all people are free to self-determine their gender identity and expression, regardless of income or race, and without facing harassment, discrimination, or violence. It’s named after one of the trans pioneers of the LGBT rights movement, Sylvia Rivera. Please consider donating to them today.

The Tegan and Sara Foundation prides itself on fighting for economic justice, health and representation for LGBTQ girls and women. They’ve worked hard in their first year to establish connections and speak up about needed changes. You can learn more and support their work here.

Monstering is an independently-run, nonprofit publication that honors and uplifts voices often ignored around health, gender, and sexuality. This online zine gives space for disabled people to vocalize our most upsetting or funny stories with no judgment, no harm. Click here to support them.

KLB Research strives to create and disseminate scientific research aimed at improving health and wellbeing for individuals in romantic relationships and LGBTQ communities. You can support Dr. Blair’s work and inclusive research through their Patreon or Facebook.

The Women of Color Sexual Health Network (WOCSHN) is a group of women, both domestic and international, with a focus on the sexual and reproductive health needs of women of color. The mission of this working group is to empower and include more women of color in the field of sexuality, sexology, and sexual health. Learn more about their mission here.

Health and Illness

This year was a scary one for many disabled people living in natural disaster areas. We struggle with getting adequate help, transportation, and medications. Portlight Strategies, Inc., a 501(c)(3) tax-exempt nonprofit organization, was founded in 1997 by people with disabilities, to address disability rights issues through community-organizing and capacity-building events. They were instrumental in saving the lives of many in hurricane zones this year – and they could use your support.

Invisible Disability Project (IDP), a 501 (c)(3) org, is a social/cultural movement and an educational media project that consciously disrupts “invisibility” imposed upon unseen disabilities at the intersections of race, class, gender, and sexuality. They are devoted to building human connections and self-advocacy by dismantling shame and stigma. IDP effects change through public conversations and interactive online content with the goal of creating an informed, mutually supportive community. You can help support their efforts here.

The International Pain Foundation is a great organization. They work hard to help raise awareness about various pain-causing conditions as well as providing resources and help for patients.

RA Guy has been a staple in patient communities for ages. Recently, he started his own foundation that focuses on providing education, support, and connection for arthritis patients.

The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases, also known as periodic fever syndromes… AKA part of what I deal with (and hate) daily.

The Systemic JIA Foundation was set up by families dealing with SJIA/Still’s. The disease has taken so many from our community, both as children and adults. We have to start working towards more research and better treatments – and that’s what this foundation does. Click here to learn more.

NORD – the National Organization for Rare Diseases – works with patients, providers, researchers, pharma, and more to help raise awareness and money for the many rare diseases out there (some of which aren’t even on their list). You can donate to help further their cause.

Pets and Animals

Portland Guinea Pig Rescue is a volunteer group dedicated to serving the Guinea Pig community. They’ve done an amazing job at rescuing and taking in little piggies that need homes, urgent medical treatment, and love. They’re also the only real rescue in Oregon that is able to do this work – and it’s because of donations. Can you help?

Crazy Cavies is a Non-Profit 501(c)3, No Kill Guinea Pig Only Rescue that provides a temporary safe haven for abandoned, neglected and/or homeless Guinea Pigs, located in Lauderhill, FL. They do amazing work with very little, but you can help them get even better.

The Jameson Animal Rescue Ranch works hard to find permanent homes for the homeless, save animals from euthanasia, sickness, and abuse while simultaneously helping responsible pet owners keep their pets and unite seniors with forever companions. They were very instrumental in helping animals survive the North Bay fires earlier this year. Donate here.

Amigos de los Animales in Puerto Rico has taken over the work of saving and providing aid to animals on the island. There are an estimated million stray dogs and double the amount of cats living on their beaches, highways, and jungles – and even more in need of assistance and protection, especially after the hurricane. Donate today.

Politics and Relief

Don’t worry – I won’t go angry feminist too much right now.

Resistbot has been instrumental in helping to mobilize people to fight for their rights in the last year – especially those of us with health crud. They’ve been able to keep up pretty well, adding new features and making political activation even more accessible. You can help them to help us all.

With a new set of wildfires blazing across California, it’s important to help fire victims in any way you can. The California Fire Foundation provides aid and support to victims. You can donate here.

The Hispanic Federation is still working hard to help people in the aftermath of the hurricane devastation in Puerto Rico. Many still don’t have real access to clean water, healthier food, or medications – and the rebuilding process continues. You can help them here.

Individuals

My friend Kenzie defies words. She is all at once innovative and an old soul, spontaneous and planned out, supportive and sassy. There are a million reasons I’m glad she and I are friends. Unfortunately, she’s struggling a lot lately. While dealing with being a senior in college, she’s juggling an ever-growing list of serious chronic health conditions. The dual hit to the bank account of being a chronically ill college student is something that’s really hard to cope with. That’s where we come in! You can donate to her Amazon wishlist or contribute to her fundraiser that helps train her service dog (and giant love muffin) Ophie.

Brit is another chronically ill gal. Recently, she’s received a rare disease diagnosis and struggled with back-to-back hospital admissions. On top of that, she’s barely able to eat. You can help get her food and supplies through her Amazon wishlist.

Struggling with undiagnosed health issues is scary, especially when they land us in emergency multiple times. Kat, who is a freaking joy to know, is dealing with just that – struggling with a high ER bill on top of needing to see specialists. You can help offset the costs she’s been hit with on her GoFundMe.

Judy lives with a number of health conditions. Unfortunately, she has little help with day-to-day tasks, schooling, medications, and more. She’s looking to get a service dog, but they’re very expensive. Please visit her GoFundMe to learn more.

Annabel has been fighting breast cancer for over a year and recently had a second major surgery. Unfortunately, she’s not covered under the Family and Medical Leave Act (FMLA) and will be out of work for two months. You can help cover the costs of her surgery and expenses via GoFundMe.

Antonina is a hard-working Haitian immigrant with 4 children. She works as a nurse to provide for her kids, but this has left her with severe damage in her knees – to the point she needs a total knee replacement on each one. With the Temporary Protected Status of Haiti being ended before August 2019, it’s incredibly important to raise the money to get these surgeries as soon as possible to allow for the best possible outcomes. You can donate here.

Alex is a great reminder that healthcare isn’t better in other countries – yes, even Canada sucks when you’re chronically ill. They have been fighting to get an accurate diagnosis for ages. Unfortunately, that requires a series of very expensive tests that the Canadian health system won’t cover. You can donate to Alex’s GoFundMe or shoot them money via PayPal.

Shona, who you might remember as the author of this piece, has an outdated wheelchair. Since she is able to walk (with a metric ton of pain), the National Health System in the UK won’t help her get a new one. Since she can’t work, either, funds are limited to get a new chair. Please consider donating to her GoFundMe.

Emma also lives in the UK where they are ill-equipped to handle her complex medical issues. On top of chronic Lyme Disease, she endures a number of harrowing symptoms that leave her bedbound 90% of the time. Her family is raising money to help get treatment underway as the NHS isn’t cutting it.

Dawn runs Spoonie Chat, a weekly Twitter chat held on Wednesdays at 8 pm Eastern that’s focused on living well will a variety of chronic illnesses. She’s currently working on crowdfunding her writing to help get more representation of illness out there.

Black and Brown Spoons is an online community started to help Black, Latinx, Asian, Middle Eastern, and Indigenous people with chronic illnesses get connected to information, resources, and support around healthcare and disability rights in the US. Honestly, most of us who are popular are pretty white and we don’t experience the same issues the same way. They’ve got a Teespring page set up with great gear you can grab while helping them further this awesome mission. They have a merch giveaway that ends today, too, until 6 pm Eastern today. Check out this Twitter thread for how to enter.

Jennifer Brea has made a lot of headlines recently. As the filmmaker behind Unrest, she is challenging providers to see and believe the reality of patients living with ME/CFS. The film premiered at Sundance this year and it’s gotten rave reviews (mine is coming soon!). If you want to help Jennifer and her organization raise more awareness of ME/CFS, please click here.

Bree is one of my favorite people. I can’t believe I get to be on a panel with her soon! (Go to Clexacon – you won’t regret it.) She’s a fellow queerdo, disabled, and just hella cool. She helps remind people all the time to practice self-care and is very open about mental health, which is so very needed. You can help her through her fun Amazon wishlist, her medical one, or on Patreon.

NC Queer TROUBLMakers (Trans Revolutionaries Organizing Under Black Lives Matter) is a statewide collective of queer and trans people of color in North Carolina. We began formally working together in August of 2015, coordinating Queer and Trans Black Lives Matter demonstrations at Pride events across the state. They need additional funding to help their members pay rent and cover basic living costs. Visit their GoFundMe page to learn more.

Selfish Time

It’d be hard to write this out and not include my stuff. I’m semi-reluctantly posting links here that will help me to continue producing awesome content, going to conferences, and developing stuff to help all of us. You can donate via Patreon, PayPal, or Ko-Fi. Additionally, you could purchase something from my Amazon Wishlist.

I hope that this helps give some ideas for how to spend charity money during the holiday season and beyond.

 

Upcoming: SJIA Family Education Day at Cincinnati Children’s Clinic Saturday, July 22nd

Posted on by Grayson
I was hoping to head out to Cincinnati at the end of this week for an amazing event. Because of some health stuff, I’m having to stick at home… which sucks because this event is SO important.
The SJIA Foundation was started by parents of an SJIA patient to work on improving information, education, and care for SJIA/Still’s patients.
On Saturday, July 22, they have an awesome event that brings together parents, adult patients, providers, and more to discuss and learn more about SJIA and other autoinflammatory conditions.
Make sure to check out the schedule, featuring awesome presentations from some of the coolest SJIA parents AND doctors (including Dr. Alexei Grom!).

 

WEGO Health Activist Awards: I’m Nominated

Posted on by Grayson
purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'not standing still's disease' in white text
I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards – Best Kept Secret, Patient Leader Hero, Best in Show: Blog, and Advocating for Another.
WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often do so without recognition.
I’ll be honest – I’m not sure who y’all are who nominated me, but you’re beautiful. It’s been a rough couple of years and I’m not always sure anyone is listening, watching, or paying attention to the work I’m doing. Don’t get me wrong – I’m not doing it for accolades, but it’s nice to get a pat on the back once in a while at the very least.
purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"
This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It’s a big deal and would be a great thing for any of us to be able to attend. If you’d like more information about the summit, you can learn more here.
I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!
1) You can click on my endorsement badges located to your right on the sidebar
2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo
If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

 

AFGO: another fucking growth opportunity

Posted on by Grayson

At my therapy appointment last week, we talked about the frustrations I have with people interjecting themselves into this situation with Sammy… Being supportive is one thing, but throwing a fit because you’re not in the thick of it is inappropriate.

It was a really well timed visit honestly.

One of the hardest things about my nephew being ill is not knowing what is going to happen or be able to plan things. Obviously when any crisis like this affects my sister, I want to be there right away. I’m glad I waited and tried to plan better, because if I had gone right away I would likely have had to miss the surgery itself. That’s too important.

The uncertainty is hard. The out of control feeling is hard. The patience is hard.

My therapist told me to treat it like an AFGO – another fucking growth opportunity.

I certainly appreciate the idea, especially the bit about the cursing… and how it sounds like you’re fed up with the situation already.

Definitely, especially with you-know-who.

That’s how I’m going to approach this right all now – as multiple opportunities. It’s an AFGO. It’s an opportunity to see my sister, meet my nephew, and hang out with the fam. It’s an opportunity to see San Francisco and travel more.

Mostly, it’s an opportunity to be in a type of care coordination role. I need to make sure that this family is taking care of themselves and do what I can to help them with Sam and Marissa.