Who attended the IGAN webinar yesterday?

[Zazzel]

I know for sure several of us did. I would like to hear your thoughts.

The young people really touched my heart with their stories.

Wish they would put more emphasis on studying the effects of nutrition on the disease.

Glad that our “rare disease” is getting some attention because it seems like even though it’s categorized as rare, an awful lot of us have it.

[SN23]

Yes it was a very moving experience. I attended in person and could feel the impact. There is certainly (I feel) movement on the fast tracking of the treatment thanks to the impactful testimonials. Fingers crossed.

It was an eye opener for many. A pharma director I talked to said she had no idea there were so many young people who were afflicted with IgAN!

[Zazzel in reply to SN23]

So glad you got to be there in person!

[SN23 in reply to Zazzel]

Yes I am so glad too that I could be there🙏

[Bet117]

Where did you find the webinar link? Great to share!

Thanks !

[Zazzel in reply to Bet117]

SN23 shared it with all of us. She wrote several posts on HU about it. Here was the link. kidney.org/events/local-eve... I don't see a replay as of right now.

SN23 can speak more about it as I missed the introduction, but it looks like it was in preparation for two large studies being done for IGAN. Both studies can be found here if people want to participate.

igan.org/treatigan/

igan.org/phase-3-protect-st...

SN23 did they make any more mention of whether they would change these research studies due to the concerns of some of the participants yesterday such as being able to stay on current meds?

[Bet117 in reply to Zazzel]

Thanks!

[SN23 in reply to Zazzel]

Hi Zazzel,

Yes there will be a replay of the webinar. I will keep track and will share. There are currently several clinical trials (close to 10) both phase 3 and 2 and many of them have shown great promise. The purpose of the meet was for FDA to get a first hand understanding of the disease, the impact it has on individuals and families and the fact that there is currently no treatment other than prednisone which has lifelong debilitating and adverse impact and to underscore the urgent need for treatments. Fast tracking of promising treatments would mean approving it ahead of time and then doing a survey later to evaluate the impact and if the impact is adverse then this may also mean withdrawing it later. This is unlikely as some of the medicines have already shown great promise.

They have taken note of the requirements that were expressed such as keeping the current medication, clinical trial participation of children and post transplant patients etc,

Please note that the organizers are inviting comments from patients and caregivers and these will be incorporated in the report being prepared for FDA. So you have a chance to contribute so please do. I will share the organizers post regarding this and where you can contribute.

I think the meeting overall made great strides and expect something positive to come out of it.

[Zazzel in reply to SN23]

Thank you for the summary and for being our contact point for all of this. I only see 2 of the trials on the site, did they mention where we might find the others? I'm not suitable for either of the ones on the site, but would like to participate. Thanks!

[SN23 in reply to Zazzel]

These are some that I recall:

NefIgArd phase 3

Artemis -igan phase 3

Atacicept in IGAN phase 2

Safety and Efficacy if APL-2 in gns

Phase 2

Cemdisiran in IGAN phase 2

Sparsentan phase 3

Sent from my iPhone

[Zazzel in reply to SN23]

thank you! oh, now after looking on their site, I do see a very hard to read flyer which lists them all. Ha! I'll have to pull out the computer magnifying glass.

[Robiga]

Hi zazzel

I am Rob from western Australia. I have been diagnosed with iga n.

Creatinine 1.3

Protein 0.43 gl

Protein/creatinine 98 g/mol

I am on micardis 80 mg for bp which is on control now.. Can you plz share with me how protein in urine can be controlled. Ur valuable suggestion will inspire me to live a healthy life. I pray for ur quick recovery

Thank you

[Zazzel in reply to Robiga]

Hi Rob, controlling inflammation is key for everyone with CKD, but particularly those of us with IGAN. Some things that can help are the following:

. Balance out your Omega 3 to Omega 6 ratio. Diets high in Omega 6 can cause inflammation. You can do this by limiting or eliminating processed, packaged and fast foods. Eliminate oils such as sunflower, safflower, canola etc that contain high Omega 6. Add more Omega 3 through ground flax, flax oil or fish oil. Cook using vegetable broth, bake or air fry. If you must use oil, use olive oil

. Consider trying to go gluten free and dairy free. There were several studies done in the 80s and 90s that should some positive effects on going gluten free. This doesn’t necessarily help everyone, but you might try it and see how you feel.

.consider giving up nightshades as they can cause inflammation in those with autoimmune issues.

.reduce greatly or eliminate red meat- if you must eat red meat then eat grass fed and only limited.

.there has been some positive results seen by those on vegan or vegetarian diets when they are plant based- no garbage eating on Whole Foods

.get some exercise daily, but not heavy weight training. Better to walk, swim, yoga,

. Practice relaxation techniques such as meditation or prayer, or some hobby that completely causes you to be calm

.dont take NSAIDs

.reduce or eliminate sugar, Alcohal and caffeine. Caffeine can raise blood pressure in some individuals.

.if your bp medicine isn’t helping with the proteinuria, discuss other bp meds. Lisinopril in low doses has been known to help with protein.

. Get enough sleep every night to give your body time to heal

.have fun with friends and family- we only live once!

[Robiga]

Thank you so much