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Posted byVNS 2007 Keppra, Zonisamide, Aptiom, Vimpat4 months ago

Is anyone else sick and tired of having the Ketogenic diet suggested to them?

I know that there are people on this sub who have seen some success with the diet but I've spoken with my neuro and he says for my epilepsy it would do little to nothing and he's had patients try it and fail every time. I get inundated with well-meaning people I know suggesting the diet to me like they are gifting me the cure for what has been ailing me for over 20 years.

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level 1
Comment deleted4 months ago(11 children)
level 2

they dont know what to say when i explain that i started having seizures in college i.e. the height of my pot smoking days

level 3
Inventor of the Gatorade Cure2 points · 4 months ago

Maybe you should try the Keto diet, it's got a great track record!

level 2
lamotrigine7 points · 4 months ago

Holy shit, right?! It drives me absolutely mental, especially because even if I explain why that wouldn't help it's still "oh... well you should still give it a go"

level 3

“How do you know unless you try it?” Why would I try it if my meds work? If it isn’t broken, why should I fix it?

level 4
lamotrigine4 points · 4 months ago

Exactly!

level 3
6 points · 4 months ago

I'm guilty of hearing about the wonders of medical marijuana - the little girl who had 300+ per day etc etc - and hoping that it would be the cure-all. May I ask why it wouldn't help you? My daughter has epilepsy so it would be good to understand what may or may not work.

level 4

That little girl I believe has lennox-gestault syndrome, which happens to have some relief with his cbd strains of marijuana.

However, it's not a cure all like some pot heads tout it to be. Same with keto diets. They may work for some, but not all. And I've tried keto and gotten ridiculous 'induction flu' each time that was so bad it landed me in the er. Fuck trying that again.

level 4
lamotrigine9 points · 4 months ago

I'll be honest, I'm not super well versed in the science of it all. To my knowledge, studies have shown that marijuana can help certain forms of uncontrollable epilepsy in children really well, although not 100% of the time. It can definitely be a full on miracle drug for some kids! But, that doesn't mean that I, a woman in my 20s, should just try taking a bong hit to magically cure my epilepsy (it can actually cause seizures in some types of epilepsy). Overall, epilepsy is a super broad term, and everyone with epilepsy is different :) so, while it's definitely worth looking into for some cases, people shouldn't stick their business into mine and try suggesting me some "magic cures", especially since mine is pretty controlled with medication

level 5
Lamictal 200mg9 points · 4 months ago

There is a big difference between marijuana used to treat epilepsy and regular weed you use to get high. MJ for epilepsy is high CBD, low THC (the stuff that gets you high).

That said, it has only shown to reduce the rate of seizures in children specifically. The data on adults is variable as well as not something that is 100% reliable in either circumstance. So, it has promise and can help, but it is not a cure and does not have consistent efficacy.

I use medical MJ for joint pain from years of mountain biking, soccer, skateboarding, and basketball - ankles with no cartilage. But for treating my epilepsy, I rely on Lamictal. I don't know what I would do without it. I can't trust marijuana in the context of treating my epilepsy if it is not 100%. So I use medical, but not for seizures because unlike a child I have to show up and be functional throughout the day.

That said I do think it is very valuable to children as an option to throwing the pharmacy at a child.

level 6
lamotrigine5 points · 4 months ago

Thank you! This is explained way better than I coulda' :)

level 2
VNS, Lamitcal 2x daily; 250 mg morning, 300 mg evening2 points · 4 months ago

I know exactly what you mean! If it was super easy to get...maybe I'd try it? (Talking about medical marijuana). And people constantly suggesting CBD oil. Yes. I have tried it. But like everything else I've tried my body somehow adapts to it and it stops working after a short period of time. For some reason people don't understand how a body can "adapt" to something🙄

level 1
Lamictal 250mg, Keppra 500mg37 points · 4 months ago

If I had a dollar for every time someone recommended keto or essential oils I’d have enough money to afford name brand keppra

level 2

The difference is that essential oils is shamanism, while keto is a medically proven therapy for some forms of epilepsy. Worth trying when meds are not working.

level 2
Inventor of the Gatorade Cure1 point · 4 months ago

I'm sorry you've had to go through that. Have you tried the keto diet though, it's amazing!

level 3

F

level 1
Topiramate 150mg x2, Buspar 10-15mg x3 8 points · 4 months ago

Yuuuuuup. Especially since my topamax, which is the only thing controlling my chiari based migraines, has a warning about how hard it is on your liver and not to do anything like detoxes or cleaned (gee like keto) in the meantime.

I'm so tired of people saying things like "but maybe if you did keto, you wouldn't need those meds and it'd all work out!" I still have completely unrelated migraines....so I doubt it.

level 2
Inventor of the Gatorade Cure0 points · 4 months ago

Yeah exactly, it's the most frustrating thing. One thing I recommend to shut people up is to try the keto diet, it's got an excellent track record and can cure epilepsy and stop all seizures. It's amazing.

level 1

Yes. Im about as tired of keto as I am people suggesting benedryl for my raging insomnia.

level 2
Keppra 750 mg 2x per day,6 points · 4 months ago

Oh, Benedryl to treat insomnia. Guess what? I am allergic to it. Ugh. I so understand this.

level 3
RNS implant, briviact, vimpat, onfi, fycompa3 points · 4 months ago

Yeah me too. I’m not allergic, strictly speaking. Took Benadryl without a problem back before epilepsy. Today, it will provoke a seizure EVERY time.

level 2

Benedryl worked for me for a very short while; now I can take 6 pills and barely even yawn. It sucks. CBD does absolutely nothing for my insomnia or seizures either.

Tried the keto diet but since mybkidneys have been shit since birth, I went into ketoacididous(sp?) and was in the ICU for 4 days. Yay me.

level 1
Topiramate 200mg Sertraline 100mg6 points · 4 months ago · edited 4 months ago

That's funny you mention it, because when I was more active on the r/keto sub (or at least lurked more actively, not sure if they still say this) they used to say "the first rule of keto is do not talk about keto"... because it brought a lot of judgment as it is so different than the standard American diet. Now that it has worked for some people or I guess "enough" people, it's become more of a fad diet. FD: I do keto but I am not as disciplined with it as I should be. I think it helps me personally (and my type of epilepsy) because my seizures are nocturnal and it helps me sleep so much better- I even dream like a kid again. But it may not be like that for everyone.

That said... I am NOT going off my meds anytime soon just "because keto". I don't consider it a cure, just something that sort of helps, a little... in regards to improving quality of life etc. Also it's kind of expensive to eat a variety of foods on keto so there's that. I'm sorry you have people pushing it on you... I know there are MLM things out there for "selling ketones" or some crap that has nothing to do with the diet itself on my social media etc that is hella annoying.

edit: also apologies that I have continued to talk about it in other comments on this thread, just trying to be helpful by answering questions :(

level 2

Would you mind me asking, did eating Keto help the nocturnal seizures in frequency/ or stop them completely? If so, do you know about how long it took to work?

I've been eating Keto for 2 months now, and my daytime absence seizures are gone, but I am still having very frequent nocturnal seizures. It's very frustrating.

level 3
Topiramate 200mg Sertraline 100mg2 points · 4 months ago

I can't say if I can attribute keto to making them stop completely as I am still taking my meds (and don't intend to stop while they are working as far as I can tell). But I have not had breakthrough seizures while on my meds and on keto, and I used to have one every few months or so while not on strict keto. It did take awhile for me to get "adapted", and if i went off it (like had some cookies or pasta or something without thinking) then it was like missing my medication. Also I get less side effects from my medication and disordered sleep while on keto--- better mood, more focused, more energy etc. I feel like I noticed all this stuff slowly, maybe about a month in... like "hey I feel really good today..." and waking up right after a really long movie-esque dream, like I slept really well....etc...

If you are working with a doctor on your diet you may need to speak with them about your progress? They may want to look at your macros or something?

level 1

as a mother of a child who has uncontrolled epilepsy and is on BOTH Keto and CBD (Epidiolex, the actual pharmaceutical laboratory manufactured, regulatory compliance abiding trial drug) I COMPLETELY UNDERSTAND!

Even though I do see benefits of the diet & Epidiolex literally saved his life when he was status epilepticus for 14 days, I loathe this diet and I cannot stand when my local pediatrician hounds me about getting a medical marijuana card so that I can use his “guy” to get my son CBD with THC.... because “obviously” CBD alone isn’t cutting it.

He isn’t controlled but for heavens sake, no thanks mean no thanks. If I change my mind, trust me, I’ll be the first to let the peanut gallery know.

level 2
[deleted]
1 point · 4 months ago

CHOP?

level 3

Yep

level 1

I’m sick of Keto being recommended. So many people think I should want to switch because of bacon or whatever crap- but I’m borderline pescatarian! No thank you! It’s also dangerous if done incorrectly, and it’s not guaranteed to work!

I’m sick of marijuana being recommended. No, it isn’t a panacea! It has many benefits, but I don’t want to try it as a primary epilepsy treatment. I don’t care that it’s natural, I have what works!

No, I don’t need your crystal or salt lamp or whatever. Yoga won’t fix it either. No, your chiropractor can’t fix it, nor can your shaman, nor can your pastor. My problems aren’t because of the food I eat.

No, I’m not unhealthy because I take pills every day- it would be more unhealthy for me to NOT take them. No, my skin is not going to definitely, spontaneously melt off my body because I take lamictal! No, the side effects are not worse than the seizures. I’m glad that people with other conditions can choose not to take pills just because the side effects suck, but I can’t. I am ok with this!

No, I won’t switch to topamax because you read it will make me thin. It made me struggle to speak coherently. No, I won’t switch to keppra because you read it will make me smarter. It made me paranoid. No, I won’t switch to depakote because you read that it helps with language learning. It made me fat and leeched vitamins out of my body. No, I don’t want to switch to a medication I haven’t tried just because you read about it.

I hate the internet sometimes.

level 1
[Lamotrigine 800mg, Phenytoin 400mg]6 points · 4 months ago

What many don't realize is that epilepsy isn't by any means the same. Causes, symptoms, treatments and results vary widely.

level 2

Yeah, but like, why think that when you can talk about what worked for you or “your friend”

level 1

my mom forced me to go keto, saying it works. I don't know that it does. Just let me eat wbat i want -_-

level 1

A show recently launched on Netflix about it in the UK. It’s all I’ve heard for the last week from people trying to help.

level 2
Topiramate 200mg Sertraline 100mg3 points · 4 months ago

I know which one you are talking about- "the magic pill" (we watched it and it glosses over a lot)... I imagine some are taking that title a little too literally lol

level 1

I lost 65 lbs on keto. Seizures got worse. One every 5 weeks since the start of the year. Dislocated shoulder every time too. ¯_(ツ)_/¯

level 2

You dropped this \


To prevent anymore lost limbs throughout Reddit, correctly escape the arms and shoulders by typing the shrug as ¯\\\_(ツ)_/¯ or ¯\\\_(ツ)\_/¯

^^Click here to see why this is necessary

level 3
Valproate 750 mg, Lamotrigine 300 mg, Levetiracetam 1000 mg8 points · 4 months ago

That symbolised the dislocated shoulder. Art.

level 1
2 points · 4 months ago

It was never recommended to me and I wish it had been. I’m finally trying it and feeling good.

level 1

Not really, because it totally helped me, but I hear you. Hopefully you just say no once and they stop pestering you. But people do like to be helpful, and it has been revolutionary for a lot of people, so hopefully you can take it in stride and see that they're just trying to have your back.

level 2
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster4 points · 4 months ago

Yeah it's not that there's one person who keeps pestering me, it's just that everyone I know learns about it at some point and then comes to tell me about it.

level 2

Ditto. I too started the diet after reading about it for years. To say I was amazed at the amount of people on the diet nowadays would be an understatement.

When I was reading about it, it seemed so restrictive and unappealing. To be able to go buy Keto substitutes in the store, it’s almost a no brained.

I asked multiple neurologists as well. I always got a blank stare or no info. The way I look at it is simple. They can’t really figure out how to stop seizures, I feel like I just go to them for a prescription renewal so why not give it a go? If I loose out on being able to eat pizza, meaning a flour crust, and some other grains for a time period so be it.

I would rather give it a shot and see if it works. I despise taking the amount of meds I do. While it may not be as much as some it still makes me feel captive to the pills. I want freedom. If the diet gets me that, I’m giving it a shot. If getting some CBD oil is another step to take, I’ll look into that later.

level 2

Can you explain your typical meals for a day and how late no it took to see change? Seizures ceased or less sever or less frequency? I’m wondering if worth a shot. I have temporal lobe focal seizures. Thanks BES.

level 3
2 points · 4 months ago · edited 4 months ago

They reduced in frequency for me, from one every two months to maybe two per year. I definitely don't think it would help every single person-- not by a long shot, but for some it really helps. There are other benefits I've found too, in very stable blood sugar which for me means steady energy and moods. But my (temporal lobe) seizures have decreased.

As for typical meals, keep in mind I'm a petite 90 lb woman, so I don't need to eat as much as others, so it's a bit easier for me. A typical day will be:


3 eggs scrambled in lots of butter

or

egg drop soup made with bone broth and with butter added (I buy good bone broth from a place in my city, but make it occasionally myself in an instant pot)

tea w/lots of heavy cream


grilled chicken on bed of arugula and avocado with olive oil and lime

or

a few hamburgers on the same bed of arugula

or

egg salad with celery sticks

or

random leftovers from the night before

tea w/lots of heavy cream


steak on a bed of arugula with olive oil and lime juice

or

shirataki or zucchini noodles w/ homemade alfredo-ish sauce

or

fathead pizza (I LOVE this stuff)

tea with lots of heavy cream


Dessert: mug cake (These are quick microwaved cakes made in minutes in a coffee mug. No extra dishes or clean-up. I have a major sweet tooth, so I gotta have my keto desserts!)

Also: I regularly take electrolytes and drink lots of water, because I get headaches easily and this solves the problem for me. I really recommend getting enough potassium and magnesium, especially in the early days.

This works for me, and the only thing I haven't solved is that I want my tea sweet, and I have yet to adapt to not having sugar in it. But that's about the only problem. Also, some might say that this is probably too much protein and not enough fat, but it works for me.

Lastly, this guy kicks ass-- his recipes are amazing, and he has a really good introductory first-month menu plan (pretty sure it's free or donation only, I can't remember). I found him through his reddit posts, and I'm a big fan: ruledme Great instagram account too.

level 4

Very informative-thank you so much!

level 4
Topiramate 200mg Sertraline 100mg2 points · 4 months ago

I like ruledme for recipes too! :) I am hooked on that buffalo chicken jalapeno popper casserole!

level 3
Topiramate 200mg Sertraline 100mg1 point · 4 months ago · edited 4 months ago

FD: I have temporal lobe seizures.

You might just want to check out the r/keto sub. (note- not everyone there doing it for epilepsy but lots of good FAQs are answered and lots of good recipe blogs etc- they are very active)

Another good resource specifically dealing with keto for epilepsy is https://charliefoundation.org/

me: I eat a lot of eggs, bacon (yeah I know), brussels sprouts, cauliflower and broccoli, spinach, chicken thighs, fish, steak (we like to grill), avocado, nuts (not all of them are okay), olives, cheese, berries, peppers, squash, and mushrooms... and a lot of stuff is cooked in plain old butter, bacon grease (like my grandparents did), or certain oils. ...so tl;dr it's meat + vegetables and avoid sugar & starch, if you want to feel "full" eat more healthy fat, and for epileptics eat more healthy fat for brain health.

edit: why the downvotes? I even directed to the appropriate sub?

level 4

Someone is systematically downvoting all the comments that are positive about keto, I think.

level 4

Thank you so much! Did you slowly transition or cold turkey?

level 5
Topiramate 200mg Sertraline 100mg2 points · 4 months ago

Cold turkey for the most part. The hardest thing to do is family dinners where someone else is cooking and I feel obligated to eat their stuff (like Thanksgiving etc).

It's one of those things that gets easier the more you do it... like I don't crave sugary drinks like I used to (be they soda,cocktails, etc).

level 6

Thx Sobri :-) and great job!

level 1
keppra, tegretol, clobazan - Epileptic Former EMT2 points · 4 months ago

I actually do keto, but not really for my Epilepsy - it works rather well for losing weight.

There are two important differences to note with the affects of Keto on Epilepsy:

  • It's mainly recommended for children, because adults rarely stick to it

  • "Keto" and a ketogenic diet are not the same thing. They both aim to create ketosis, but the whilst Keto is a ketogenic diet, the ketogenic diet used in kids with epilepsy is a VLCD - Very Low Calorie Diet - which has some of the same effects, like ketosis, but also some others which are related to the way that it is basically built around eating very little.

However, I haven't had many people recommend it. I wouldn't mind trying some CBD to see if it helped though, and think it's rather backward that I can't in the UK.

level 1
trokendi xr:400mg; CBD oil: 10 mg; keto2 points · 4 months ago

No, because it works for me? Also because it has been medically studied and proven to work. By neurologists. So while your neuro may think it's shit, mine here at the center for neurosciences in tucson will quote studies for you about why it is a great supplement to medication because it HAS successfully been used as treatment when done properly. The average American physician spends less than 6% of their coursework worrying about nutrition. straight up. Less if they're a specialist. I find it abhorrent that we're not allowed to use insurance to pay for places that are qualified to monitor dietary treatments if they are recommended by physicians who have done the research and spent the hours, outside of those limited hours in traditional study, and would like to recommend the course of action as an additional treatment with proper medication.

So the assumption that because something has existed and is there as a "holistic approach" people will automatically think it's bullshit. That's fucking rich. For the record, it's on the website of Epilepsy.org, discussing that yes, it is a studied treatment as well.

Just like medications and CBD don't work for everyone. Acting like it's some big crock like essential oils to me is really insulting? Maybe those patients did it wrong. Lots of folks do, maybe your neuro doesn't have a lot of experience with it. Or maybe it wouldn't work. Tell them that you're working with a doctor and that you really appreciate their concern, but you don't think it's for you.

But for my part I get sick of people acting like a diet that has actually been studied. Perhaps if our medical system WAS willing to spend a little more time studying things like diet more answers could be had, because for me it is the ONLY thing that has helped to control my focal aware seizures, in combination with CBD. I'll get off my soap box now

level 2
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster6 points · 4 months ago

Your tone is unpleasant and weirdly arrogant. My doctor is very qualified but I’m not getting into a pissing contest about it. Seriously reread your rant and if you don’t see anything wrong then ask for a second opinion from an honest friend. I just wanted to know peoples opinion about being bombarded with this specific suggestion. My post said that people have had success with it, my doctor told me(as I said in my post) that he hasn’t seen any success for people with my specific condition as everyone here knows that epilepsy is unique to each person suffering from it and their treatment can be just as unique. Your reaction was as if I called you an idiot for trying it but that’s just not what I was doing and I’m happy you’re one of the people seeing success with it, hell I wish I was, but that’s not the case for me.

level 2

i hAVE persistent esophagitis and GERD which is not even fully controlled on PPI meds, and i have had to figured out my own food triggers, because none of the 4 doctors i saw on the matter never once instructed me about diet and lifestyle with these illnesses. i even asked the one guy... his response: well if its not controlled on PPI medication then i dont think food triggers should matter that much. rofl

level 1

Perhaps you could avoid scenarios where you're given suggestions? If it's happening so often you're sick of it maybe you tell less people.

level 2

Have you been alive for the last 20 years or so since the internet has become accessible to most people? Because if so you know that’s impossible.

level 2
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster3 points · 4 months ago

scenarios

I'll just avoid my friends and acquaintances from here on out, thx!

level 1

It sounds like your doctor has his head up his ass. There is tons of evidence in the medical literature to prove that epilepsy symptoms can at minimum be improved by changing to a ketogenic diet.

Your neuro is misinformed.

level 2

The point

Your head

(Also, I’d imagine a trained specialist has more knowledge and knows the patient who posted this too)

level 2
Topiramate 150mg x2, Buspar 10-15mg x3 3 points · 4 months ago

Or OP's seizures are fairly well contolled, so keto wouldn't improve much for them. Also, like others have said on this thread keto is more helpful for children than adults at seizure management--not to mention switching to keto to "manage" seizures may interfere with a two-part treatment plan (such as topirmate that's used for siezures/migraines or Buspar for anxiety/siezures).

level 1
-6 points · 4 months ago(0 children)
level 2
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster8 points · 4 months ago

I know it isn't restricted to epilepsy, I have friends who started themselves on it for the health benefits after reading about it and seeing the H E A L I N G nature touted by the videos they always mention that it has helped people with epilepsy, so naturally, they come tell me. I'm just tired of hearing about it.

level 3
RNS implant, briviact, vimpat, onfi, fycompa6 points · 4 months ago

I hear you. I've given up so many things because of epilepsy. Alcohol (I used to brew my own beer at one time), late nights with friends, late movies, camping, concerts, outdoor festivals, travel to visit my friends in Iowa where I went to college, no driver's license, etc. All of that is done.

Food is one thing I don't have to change. My weight is healthy, my cholesterol is low no mater what I eat (135 at the last check), I walk every day since I can't drive, etc. Plus I love fresh fruit and I grow it in our yard. I'm not giving up fresh-picked blueberries, raspberries, strawberries, etc.

level 4
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster2 points · 4 months ago

May I ask why you gave up on the festivals and concerts? I'm a pretty stubborn guy, I only gave up driving

level 5
RNS implant, briviact, vimpat, onfi, fycompa3 points · 4 months ago · edited 4 months ago

Most events (especially concerts) just run too late at night. It is hard to stay up past 10:00 PM with my combo of meds, and lack of sleep causes the chance of a seizure to skyrocket.

If it's daytime I can do it. For example the July 4th parade runs by my house and I can sit out and watch that. The carnival back in my old neighborhood is mostly daytime and I can go to that as well. I've just got to be home and in bed by 10:00 PM. And I used to be the person who stayed up to see the sunrise.

level 3

you think you're tired of hearing about it? haha i have epilepsy AND type 1 diabetes and keto is the "secret" for both. people mean well, they just read about this thing and it's probably close to all they know about epilepsy so they bring it up to be helpful. they just don't realize that you've heard, thought about it, and had to time to start being annoyed by it. and your frustration is valid, but i find it's best to just try and look past it and see the good in their intentions.

level 4
VNS 2007 Keppra, Zonisamide, Aptiom, VimpatOriginal Poster3 points · 4 months ago

you think you're tired of hearing about it?

I mean I guess so

level 2
Topiramate 150mg x2, Buspar 10-15mg x3 3 points · 4 months ago

Except mixing keto with medication(s) that are already heavy on one's liver are a poor idea.

And while the average joe would just brush it off as "well with the diet you won't need meds!" except there's sometimes comorbidities that can't just be ditched left unmedicated--like migraines, anxiety/mental health issues, and more.

level 3
0 points · 4 months ago · edited 4 months ago

Mate you can hate me or love me, but you're taking too much medication, I've been in the same boat as you - Migraines fair play, they're savage when they hit and are definitely a lot more than a headache xD But if you're on a bunch of medication already, anxiety isn't something you need to be medicated for when there's plenty of natural cures out there :) things YOU can do to set yourself right, even the thought of doing/treating something yourself sounds better than staring at a pill pot blankley at ...am or not feeling yourself through all the side effects? Or just simply keeping on top of it all... And you're American right? It could save you a lot of money also! Anthony Robbins - Awaken the giant within. Sick place to start :) p

level 4
Topiramate 150mg x2, Buspar 10-15mg x3 1 point · 4 months ago

Cool story bro.

Tell that to my chiari malformation and my chronic pain condition where non of my joints stay in their sockets, and my autonomic nervous system dysfunction--where my body is in a constant state of adrenaline dump and panic.

But I'll stop my meds and go back to having loads of seizures when my literal unavoidable anxiety levels get too high again, sounds like a great idea to me :)

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