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Help Krys Beat Multiple Sclerosis!

$59,111 of $80,000 goal

Raised by 412 people in 15 months
Created May 18, 2018
Organizing Team


My name is Krys Méndez and I’m currently facing the biggest fight of my life, and urgently in need of a Bone Marrow Stem Cell Transplant procedure to halt my aggressive Multiple Sclerosis (MS).

Every bit of support will bring me closer to getting the treatment I really need, and allow me to finally plan a future, support my family, and fulfill my life’s mission as an educator and scholar.
 
My parents and I in 2007, the year before I was diagnosed. At the time, I was in fairly good shape: I was exercising about five to six times a week.

My Story:

In 2008, I was diagnosed with Multiple Sclerosis (MS), an incurable, neurodegenerative condition in which the immune system attacks the central nervous system.

With each attack, or flare up, comes anothe possibility for increased disability. Since my diagnosis at the age of 20, when I was midway through college, I’ve had to continually readjust to lower and lower thresholds of functional ability, and heightening levels of pain and fatigue.

Now, things have reached a new level of urgency as I find myself less and less able to do activities I've always enjoyed--such as read, write, teach, travel, and exercise. These are activities I've always taken for granted, and form a critical part of my identity.

Writing about this is difficult for me, not only because of the vulnerability it entails, but also because I'm already so familiar with stories of pain and suffering.

As a former educator and community organizer, I used to work with various marginalized communities in New York and Providence, RI--working, particularly, with immigrants, housing-insecure tenants, and queer youth of color.

In that work, I met countless struggling families and resilient youth who had harrowing stories to tell--the types of stories that compel you to continue that kind of work!

I'm also the child of working-class immigrants from Honduras and Puerto Rico, and have seen first-hand the impacts of institutional and environmental racism on my family.

In other words, in the context of everything my community was facing, speaking up about my own issues with MS seemed trivializing and possibly selfish.

But MS progression has been catching up with me. It has slowly eroded more and more of my independence, taking a huge toll on my quality of life. Worst of all, it has been undermining my ability to do the things I love.

Although I have immense educational privilege--having been the first person in my family to finish college and attend graduate school--the disease and my particular situation have left with me few support systems.

For one thing, I'm chronically sick, single, and from a working-class background (my parents were both maintenance workers in New York).

Last year, my income hovered around the poverty line as I struggled to keep up with work as a PhD student--and leaving school isn't an option at the moment since it would mean losing my insurance and livelihood. I also have little family in the U.S. outside my elderly parents, who live in a different coast.

All these factors have contributed to a decline in my health, and have led me to make a very public plea for help from my community.

Here, I'm asking for your support in beating MS--before it progresses to a point of being uncontrollable.

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Living With MS:

Imagine this: instead of wondering about a future career, family, or romantic life, you wonder, instead, if you'll be able to walk next year.

Or if you'll be able to feel your hand in the morning when you wake up. Or able to sustain enough energy to get through an important exam. Or able to support your elderly parents and sick brother as they get older.

This, unfortunately, is my predicament.

For me, one of the most challenging parts of living with MS is that it's a notoriously unpredictable and commonly misunderstood illness.

We can understand MS this way: Since I have the more common relapsing-remitting variant of MS, my T cells target the insulating layers, or myelin sheath, of brain and spinal cord neurons. This attack causes inflammation that results in damaged and severed nerves, as well as scar tissue (sclerosis) noticeable in MRI scans.

Given that MS is one of the several hundred known autoimmune conditions, we can also think of my body as always at war, attacking myelin if it were foreign invader.

The result of these successive autoimmune attacks is a long list of disabling symptoms that I struggle with daily: everything from chronic nerve pain, fatigue, numbness, blindness, tremors, and paresthesias, sensitivity to heaty, light, and sound, as well as issues with mobility and cognition.

Adding to the challenges is the sheer invisibility and difficult-to-describe quality of most of my symptoms.

As I’ve learned before, rare neurological conditions can also accelerate quickly, leaving little time for pre-planning. And having exhausted most of my reasonable and affordable options for the treatment of my aggressive MS, I’ve been cornered into an impossible situation:

Either I bear the costs and risks of one of the most aggressive (but effective) treatments available for MS today, or accept, with little exaggeration, a steady progression of disability and diminished quality of life.


A Decade of Growing Disability:

Looking back, this past decade has read like a map of strange medical upsets: for stints lasting mere minutes to months, I’ve found myself half-blind, deaf, partially paralyzed, immobile, crippled by severe migraines and vertigo, and even—as happened in one scary incident —left unable to speak or swallow.

Since I was diagnosed with the most common form of MS—one that follows a pattern of relapses and remittances—it wouldn’t be unfair to say that I’ve spent the past ten years adjusting and re-adjusting to a sequence of body-altering flare ups .

Seven years ago, when I had a particularly heinous flare, the nerve damage in the back of my head and neck led to an injury so long-lasting that I’ve needed a special drug regimen to manage the pain from that event.

In a number of other cases, I’ve had vertigo and migraines so severe I’ve needed to be hospitalized. Oftentimes, these happen with little forewarning, putting me out of commission for days and weeks at a time and unable to do some of the most taken-for-granted activities--like reading, watching TV, or even falling asleep.

Given symptoms like these, I did everything within my power to take control over my MS. Rather than having a conventional twenty-something trajectory of multiple jobs, a dating life, and advancement in a chosen career, I’ve instead spent many of these years living day to day, migrating from one doctor to another in the hopes of finding relief.

I’ve easily spent several thousands of dollars over the good part of a decade trying a long list of different medications, treatments, supplements, and exercise regiments, only to limited avail as the MS continued to snowball.

MS is also usually progressive , and now that I'm reaching the ten-year mark, I face a shrinking supply of available treatment options. MS progression has occurred even in spite of accessing treatment in some of the most reputable MS clinics in the U.S. (NYU and USC), and despite having tried some of the most powerful FDA-approved medications available (Tysabri, Gilenya, Ocrevus).

But there's no question: I need to be aggressive in treating my MS, before the neurodegeneration becomes unmanageable.**

For the most part, the existing disease-modifying treatments do not reverse damage already caused by MS. They do not magically re-myelinate neurons. They do not come anywhere near ‘cure’ status as stand-alone treatments. And to the extent that they’re effective at all, the most they’ve ever been able to do is pre-emptive: stopping things from getting worse**.

They come no where close to stem cell treatment, which has been proven to be aggressive but effective.

My parents and I the night before Christmas, 2017. I was thankfully in remission.

Halting the Progression:

When a friend advised me to look into clinical studies, I was incredibly skeptical. Although I knew many standard treatments started off clinical studies, I felt the odds, given their 'experimental' nature, made them unlikely to be helpful.

It was around this time that I learned about a procedure that has been surprisingly effective for people with aggressive MS: a bone marrow stem cell transplantation (HSCT) procedure that works on “rebooting” the immune system, preventing it from further damaging the brain and spinal cord.

The more I studied the impacts of HSCT on MS, the more my resistance to experimental trials started to wear down. Skepticism slowly turned into astonishment and even hopefulness as I communicated with people online who went through the procedure, including this BBC reporter with MS.

In HSCT, the overall idea is quite simple: since an MS patient’s immune system is faultily primed to attack myelin, one could, in principle, re-calibrate immune memory by abolishing all record of ‘myelin’ as a foreign invader. HSCT, specifically, uses the stem cells of harvested bone marrow to rebuild the immune cells (including T and B cells) destroyed during low-intensity chemotherapy.

In recent years, a plethora of studies have been published supporting HSCT as an effective and promising treatment for MS, particularly for younger patients earlier on their disease (see: Latest News about HSCT at the National Multiple Sclerosis Society page).

Hundreds of people have already done it in clinics around the world, including a famous one at Chicago's Northwestern University.  (Also see: articles, links, and research about HSCT on my personal web page.)

Unfortunately, neither insurance nor research funds currently cover HSCT for MS for most patients. And while there are clinics that currently do the procedure, all have high out-of-pocket costs, including a cost of more than a $150,000 in Chicago.

(And while HSCT may become an approved treatment in 15-20 years, I know I can't wait that long.)

Following months of research into this, I’ve decided to do my stem cell transplantation in a highly-regarded clinic in Puebla, Mexico (Clínica Ruiz), where hundreds of HSCT procedures have been performed by award-winning doctors since the 1990’s.


Friends and beloved community, this is the breakdown of the costs:

HSCT Procedure
Includes bone marrow surgery, low-intensity chemo, and a month-long residence in the clinic (see also my web page for cost breakdown):
$54,500

Travel costs
Travel costs include flights to New York, San Diego, and Puebla between my parents and I, as well as lodging and other costs for my parents (who will be my mandatory companions) during their stay in Mexico:
$5,000

Recovery costs
Includes costs for prescription medications as well as COBRA for continued health insurance coverage (since my student insurance will be cut during my medical leave):
$20,500
 
Although I originally scheduled the bone marrow transplant in Clínica Ruiz for June 2018, due to a lack of funds I’ve decided to spend the upcoming year fundraising (tentatively scheduling the same procedure for June 2019).


Given that this is one of my last hopes of slowing the progression of my aggressive MS, there is no question for me whether or not it’s worth the time, energy, and monetary burden. Since investigating HSCT and communicating with countless individuals online who have done this procedure, I’ve been feeling incredibly hopeful for the first time in a long time.

Your support will help me plan a future and pursue my life's mission: I want to complete my doctoral work at UC San Diego, continue my research on Central American migration to the U.S., and get back to community organizing and advocating for immigrant rights, housing justice, and the rights of LGBTQ youth.

InThe Cancer Journals, Audre Lorde once wrote about how the love of her community kept her alive in her final years. Specifically, she writes how "without community there is certainly no liberation, no future."

As I continue to work on this medical fundraiser, I feel this more intensely than ever. The love and support of my community will keep me alive, help me plan a future, and enable me to keep fighting for all of us.

I know we can do this!

Thank you for taking the time to read my story and donating. I am humbled and honored by the friends and family who have supported me.

Best,
Krys Méndez Ramírez

krysbeatsms@gmail.com

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A few summers ago, during one of my research trips to Chiapas (southern Mexico), I met this handsome fellow.


Other Ways to Donate:

Via VenMo @KrysMendez88

Please write “Medical Fundraiser” in the description, and whether or not you want to be anonymous. Unless you specify otherwise, I will assume you won’t mind being listed as a donor on GoFundMe, once those funds are transferred over.

Via Ugift:

A lesser-known option is to wire funds through Ugift ( https://www.ugiftable.com), a platform that enables people to wire funds to ABLE accounts. Log onto ugiftable.com and enter my personal code of “E9D-E69.” The advantage of Ugift is that it wires the funds directly to the ABLE account, and without transfer or platform use fees. I will then add the donated amount to the GoFundMe page for accountability purposes.

See also: Ugift FAQs: https://www.ugiftable.com/home/faqs.html

FYI: The temporary Facebook fundraiser will close down over the summer. Donations sent here will also be added to the GoFundMe page. It’ll be too laborious to enter individual amounts, so I will enter the total amount donated here, listing it as “Facebook fundraiser.”

Additionally, all donations through GoFundMe will go to an ABLE account , which functions somewhat like a trust fund for people with disabilities.***

***********************************************************
More about the campaign to help Krys beat MS can be found here: https://www.facebook.com/krysbeatsms/

More writing about my battles with MS can be found on my personal site, https://krysmendez.com/.

You may also contact me at krysbeatsms@gmail.com if you would like to volunteer your time and services, media contacts, etc.

#HelpKrysBeatMS #KrysBeatsMS

Facebook: https://www.facebook.com/krysbeatsms/
Instagram: https://www.instagram.com/krysbeatsms/
YouTube: Help Krys Beat MS! 

Wordpress: https://krysmendez.com/krysbeatsms/
Google Site: https://sites.google.com/view/krysbeatsms/

Twitter: https://twitter.com/KrysBeatsMS
Tumblr: https://krysbeatsms.tumblr.com/
Pinterest: https://www.pinterest.com/krysbeatsms/

Contact: krysbeatsms@gmail.com

***********************************************************
Since I love to research, I've created a page for latest stories and research on stem cell treatment for MS. This also includes news articles, videos, and links to previous HSCT fundraisers.

See published research articles on HSCT as an effective treatment option for MS, including from The Lancet and the American Academy of Neurology.

***********************************************************
Footnotes:

** In cases like mine, where enough damage has likely gone underway, these medications are even less effective. This was explained to me years ago by my first MS specialist at NYU, before many review studies confirming the efficacy of bone marrow stem cell transplants for MS were  published.

With MS, you have a critical window, particularly in the early stages, in which your central nervous system is supple enough to re-bound from the type of injury MS flares cause. Speaking of relapse-related damage, I recall him telling me how there’s just “not much you can do once the horses have fled the barn.”

In other words, as the disease progresses and more and more flares occur, the condition becomes increasingly unmanageable, and is the main reason why the bulk of pharmaceutical treatments for MS focus on prevention. Once it reaches a stage of continual progression, treatments available become less helpful. (In fact, only one treatment, Ocrevus, has been FDA-approved for progressive MS--and that was just last year). This focus on prevention has led many neurologists specializing in MS to conclude that the more aggressive the treatment, the better.

***According to CalABLE: "An ABLE Account is an investment account available to Eligible Individuals with disabilities. ABLE Accounts are made possible by the federal Achieving a Better Life Experience (“ABLE”) Act of 2014. ABLE Accounts allow individuals with disabilities to save and invest money without losing eligibility for certain public benefits programs, like Medicaid and Social Security Income (SSI).

***********************************************************
My interview with Fusion last year on disability justice. I did this interview after another significant relapse, which required the use of high-dose, anti-inflammatory medications:

+ Read More
It is finally happening. I say this with a bone-deep sigh of relief.

It was almost 2 years ago today that I first decided I was going to do this stem cell transplant (#HSCT), cost me what it may. I knew I was going to do whatever it took, and that this would be, without exaggeration, one of the biggest battles of my life.

On October 2017, I reached out to people on HSCT Facebook groups for MS and was overwhelmed by the largely positive response I received from people who've already done this journey.

Almost everyone I contacted said I should do it, and do it soon. Many people shared remarkable stories of going from being bed-bound to now working and living the lives they dreamed of.

A Canadian man with disabling walking difficulties has, for over a year, been running marathons to raise money for others' stem cell treatments. A woman in the U.S. went from being bed-bound to walking and returning to her work as an artist. A well-known BBC journalist in the UK was able to finally stifle more than a decade of crippling fatigue.

With over 2,000 such procedures having been done since the 1990's in different clinics across the globe (including in Chicago, Ottawa, Mexico, Russia, Israel, and the Philippines), there's now a core, growing community of stem cell veterans who continue to help others get this game-changing treatment.

For many of these people, HSCT was nothing less than a second shot at life. It was a game-changer.

Earlier this month I suffered a significant flare, and all the hassles and heartbreak it involved served as a reminder. Let it be clear: MS is a serious condition that can lead to irreversible damage to your brain and spinal cord.

My latest walking difficulties (which I blame on the callous indifference of the ableist academy) also made it clear to me I needed to act fast.

That's because the 10 year mark is the average point at which a milder 'relapsing' MS becomes unmanageable, entering a stage known as 'secondary progressive' MS, for which there are fewer effective treatments.

As with the current drugs available for managing MS, HSCT is more effective in the early stages of the disease, before runaway nerve destruction and decay makes the condition largely intractable.

I was diagnosed 11 years ago, and the flare I suffered this month led me to dream of a better life: I hope never to deal with this again.

This time, I invited friends into some of the horrors of an MS flare, and many sat with me as I tried to bare the storm. I suffered sudden, unpredictable, and rapidly accelerating nerve pain that drove me to the ER three times, all thanks to ER doctors who refused to give me the standard treatment for a acute MS flare (something that could easily be looked up with a damn Google search).

The ER doctors at UC San Diego knew remarkably little about neurological autoimmune conditions, all while dismissing my own understanding of my body and over a decade of studying the disease.

Not until I switched to a different hospital system, and was examined by an actual neurologist, that the severity of my condition was acknowledged. But at that point, the MS had wrecked more damage in my body, leading to severe pain in my left leg that still impacts my walking. This was damage that could have been easily nipped in the bud with access to some rather cheap prednisone tablets.

To say the least, it has been a nerve-wracking year of watching sand descend to the bottom of an hourglass. But now it seems like I might be reaching a turning point.

Today, I finally did what I thought was impossible just a year ago. I paid half the cost of the procedure; and in a few weeks, my father, to whom I transferred the other half, will be finishing payment. It's really happening.

In the coming weeks I'll be sharing more details of the procedure, which includes a few courses of chemotherapy to ablate my current immune cells. Put differently, the point of the chemo is to wipe out the 'faulty' memory that causes my T-cells to attack the myelin sheath covering neural axons in my brain and spinal cord.

(Myelin is a protein covering that allows nerve cells to conduct messages effectively, and excessive destruction of myelin can lead to permanent destruction of the affected nerves.)

Thanks to the hundreds of you who've donated in the last 14 months, I can now cover the largest single expense of this fundraiser, a whopping $54,500 of a month-long treatment in a Monterrey clinic.

But this fundraiser isn't over. I am now in need of additional funds to help me get through the next few months, during which time I will be unable to work.
Already, the bills are piling up, and that was BEFORE I ended up going to the ER three times due to medical negligence and a stressful year of combatting academic ableism (blame it on a double whammy of the medical and academic industrial complexes).

My inadequate student insurance only covers 60% of my hospital bills, and 40% of what I anticipate to be thousands of dollars will still be a considerable cost I can't cover with the paltry $11,000 UC San Diego paid me this past year.

So the journey continues. I hope many of you will continue to join me and learn from my experience. I, too, will do my best to teach, and learn from, my beautifully diverse community.

As we approach 2020, let's continue fighting for a better world we all know is possible.

- Krys
+ Read More
Thursday, June 20, 2019

Dear Community:

We did it. After a year and a month of grassroots fundraising, we've finally reached our lower goal of $55,000: enough to cover the cost of a Bone Marrow Stem Cell Transplant (aka HSCT).

There are no words to express my disbelief. Despite unanticipated challenges this past year, we were still able to raise the amount needed for the procedure.

And thus far, we've done this entirely through grassroots fundraising--that is, reaching out to and creating events centering members of our communities.

After re-scheduling twice (after original dates of Jun 2018 & Jun 2019), I'm finally a big step closer to getting the Stem Cell Transplant I need to halt my aggressive MS.

WHAT'S NEXT?

In the next few weeks, I will be working with family to consolidate and transfer funds to Clinica Ruiz's bank account.

Treatment is also scheduled to begin on September 16th.

The fundraiser will keep going until we reach $80,000*, and funds raised from this point forward will help me with my day-to-day medical expenses.

Unfortunately, as a graduate student, I'm only allowed a single *unpaid* medical leave. I'll be unable to work for at least a few months post-treatment, and I'm ineligible for unemployment benefits and other entitlement programs.

I still have to manage related medical expenses for pre- and post-treatment care (including insurance, food, medications, co-payments, etc.).

Some of the other costs that I will need funds to cover include:

--over $1000 deducted by GFM for processing fees

--a few hundred dollars in stipends for tremendously helpful team members looking for accessible work

--flights from San Diego to New York (mid-August) and New York to Monterrey, Mexico (mid-September to mid-October)

--post-HSCT medical expenses, including organic foods, medications, and any COBRA or Affordable Care Act expenses (to maintain health insurance)

I don't have words for my immense gratitude.

To the hundreds of people who've donated and helped me fundraise this past year:

THANK YOU.

Your donations will help me re-gain control over this disease, improving my life prospects overall.

- Krys


NOTE: If you'd like to do more research on MS, stem cell transplants, and/or the clinic where I'll be treated, you can also check out the various resources and links available on the campaign's website ( https://sites.google.com/view/krysbeatsms/) and on my personal website ( https://krysmendez.com).

*This was figure set between a professional fundraiser and I, after doing our research, studying similar fundraisers, and setting up a budget.

**While expensive, the same procedure is over twice this amount at research clinics in Chicago and Ottawa.
+ Read More
An update on Krys's fight for accommodations (from April 3, 2019). Krys is still recovering from the chronic stress this unanticipated battle with the university has caused him, but he wishes to emphasize this victory:

#MSChronicles #HelpKrysBeatMS #AcademicAbleism #AccessIsLove

This update is overdue, but I have good news to report!

In February, I submitted an open letter to Dr. Becky Pettit, the Vice Chancellor of Equity, Diversity, and Inclusion (EDI) at UC San Diego.

( http://triton.news/2019/02/submission-universitys-inadequate-system-handling-disability-made-sicker-open-letter-vice-chancellor-pettit/).

In the letter, I describe my grueling ordeal: nine months of turning to one office after the other for assistance, from my home department (Ethnic Studies) to the Office for Students with Disabilities to Human Resources to the Dean of Social Sciences and beyond. The chronic stress and insecurity negatively impacted my health and even derailed my fundraising efforts.

I met with Dr. Pettit the very day the letter was published, and to her credit, she listened to my story and said she would investigate the matter.

A few weeks later, just as my comrades and I were considering more serious action, I received good news: UCSD’s upper administration agreed to fund a flexible, student researcher position for me through the summer!

In effect, this means I’ll have security and health insurance through September (the same month in which I've scheduled my bone marrow stem cell transplant, #HSCT). After nine months of constant stress and insecurity, this has been an incredible relief!

To be sure, the researcher position is only a stop-gap solution. It only provides security through the fall, and does not address the larger issue of limited employment opportunities for students with severe medical conditions or disabilities.

While providing a temporary solution to my case, administrators have also been silent around the larger issue of #AcademicAbleism, which extends far beyond my individual case. It is our job to continue mounting pressure until we can ensure all students with disabilities have equal & fair #access to higher education.

Please feel free to contact me if you'd like to support such efforts or learn more! I can be reached at krysmendezramirez@gmail.com.

With all that said, this is a victory that we, as a community, can claim. This is what community power looks like!

I’m incredibly honored to have received support from so many sources, and I'm forever indebted to the many individuals from all over the map who supported me this hectic year.

***

MANY THANKS TO....

Dr. Becky Pettit and her staff at the office for Equity, Diversity, and Inclusion for taking decisive action and doing the right thing;

UAW Local 2865, UC Student-Workers Union for its ongoing support since this ordeal started last June. I'm especially grateful to Raul Herrera, Angela Berti, Lola Ruiz Spears, Celine Khoury, John Sarracino, Alex Bush, and Mike Miller.

Boké for the numerous conversations around strategy and disability justice;

Amrah for the sage advice and helpful connections;

My grad student colleagues Bayan, Aundrey, Hina, and Keva for coming to my rescue when I was too sick to fight, and for committing time and resources to fighting for this cause within our department;

Ale Xia, Mellisa, Liliana and Morgan for the helpful suggestions and work on the petition;

Bill for assistance combing through documents and speaking with lawyers;

A few professors who took a risk and stood for what's right;

The public support of a few disability rights and media organizations (Chronically Academic, Invisible Disability Project, Disability Visibility Project, and the National Coalition for Latinxs with Disabilities - CNLD);

And, as hard as it is to believe, the *hundreds* of people who signed the petition and sent messages of support on social media. The mass support and outrage made all the difference.

THANK YOU!!!

Krys Méndez Ramirez

***
If you'd like to support me and my fight against aggressive #MultipleSclerosis, please donate here:
www.gofundme.com/krys-beats-ms

#HelpKrysBeatMS #KrysBeatsMS #MultipleSclerosis #MultipleSclerosisAwareness #HaltMS
#stemcelltransplant #HSCT #disability #invisibledisability #AbleismIsTrash #AcademicAbleism #AccessIsLove
+ Read More
Happy Friday everyone!

As some of you know, I had to pull back from this fundraiser--which was to help me secure a better future—to focus on more immediate needs of keeping my health insurance and paying for rent, groceries, medications, etc.

Now, after months of an uphill battle, I am starting to feel hopeful. Careless university policy subjected me to an intolerable level of risk and vulnerability, and for that, they deserve criticism. You can read my story in an open letter to one of the Vice Chancellors of UC San Diego (“The University’s Inadequate System for Handling Disability Made Me Sicker”—An Open Letter to Vice Chancellor Pettit).

http://triton.news/2019/02/submission-universitys-inadequate-system-handling-disability-made-sicker-open-letter-vice-chancellor-pettit/?fbclid=IwAR2P43r64th5LOfUmDABxwbEG1FtQoWtobC-m1pvbxUdVL-pdXYypKpftng

The article also briefly mentions the fundraiser. Now that my story has sparked new momentum on this issue at my university, please (re)share this page with friends and colleagues. You never know for whom it may resonate.

Sincerely,
KMR
+ Read More
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$59,111 of $80,000 goal

Raised by 412 people in 15 months
Created May 18, 2018
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