PUBLIC CHARITY 501 (c) (3) status

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PUBLIC CHARITY 501 (c) (3) status

Postby Violet M » Sat Mar 05, 2011 11:20 pm

Health Organization for Pudendal Education has been approved by the IRS as a Public Charity 501 (c) (3). All donations made to HOPE are exempt from federal income tax.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby HerMajesty » Sat Mar 05, 2011 11:25 pm

WOO HOO! I am working on the IRS form 1023 for our nonprofit right now, and it is definitely a long and miserable process. My greatest respect goes to any and all of you HOPE Board members who made this happen. It is not easy! Congrats!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby TracyB7777 » Sun Mar 06, 2011 2:12 am

ABSOLUTELY FABULOUS!!! Thank you to all that made this happen!!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby Karyn » Sun Mar 06, 2011 1:37 pm

Dear HOPE Mods,
Congrats and THANK YOU!!!!!
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby merrie » Sun Mar 06, 2011 6:43 pm

Where can we send donations to?

Merrie
PNE onset 9/2008
Weekly pelvic floor PT since 9/2008
Numerous nerve blocks 2008 - current (pn, s2-s4 epidurals, pelvic/lumbar/splanchnic sympathetic)
PRF s2,3,4 May 2009
Numerous hip injections and trigger point injections
Numerous rounds of botox (first 12/08 - most recent 5/13)
Hibner consult / Kalinkin MRI 11/10
PT with PHRC in May 2013
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby AliPasha1 » Sun Mar 06, 2011 6:51 pm

Excellent News Violet. :D
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby Emily B » Mon Mar 07, 2011 5:12 pm

Thanks for all of your hard work on this!

Emily B.
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby Violet M » Wed Mar 09, 2011 9:29 pm

merrie wrote:Where can we send donations to?


You can go to the homepage at http://www.pudendalhope.org/ and click on "donate" in the menu on the left. You can use your credit card or you paypal account to donate.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby LottaNerve » Fri Apr 29, 2011 3:23 am

I would also like to thank you, moderators, for doing the work to make this possible.
It gives HOPE more credibility as a "Health Organization for Pudendal Education" as well as a greater sense of purpose.
I've worked on those humungous 501c packages too - so to those of you who put in all the time and effort to get it done --- THANK YOU.
http://icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
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Re: PUBLIC CHARITY 501 (c) (3) status

Postby donstore » Fri Apr 29, 2011 7:31 am

Thanks
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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