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22q11 Ireland and PANDAS Ireland

Hi all,

I'm running the Dublin Marathon this year for two causes, 22q11 Ireland and Pandas Ireland, to support my friend and her family. This is their story, 
https://www.irishtimes.com/life-and-style/health-family/by-age-four-he-couldn-t-walk-eat-or-drink-wi...

Any donations will be split between the two causes.

22q11 Ireland is a registered charity, donations will facilitate the hosting of the 22q European Conference in Dublin this year. Donations to PANDAS Ireland will be used to create information packs for doctors to raise awareness of this condition.

I'd appreciate any support you can offer, every little counts. 
Thanks, Brenda
 
22q11.2 DS is a missing piece on the 22nd chromosome and brings with it 180 different symptoms affecting almost every system in the body: heart, palate, kidneys, immune system, brain. https://www.22q11ireland.org/

Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections, known by the acronym PANDAS is an autoimmune disorder that affects the brain. http://pandasireland.ie/

: https://www.irishtimes.com/life-and-style/health-family/by-age-four-he-couldn-t-walk-eat-or-drink-without-jerking-1.3198322

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Status updated: 21st Jan, 2018

http://www.inha.ie/sensory-processing-disorder/

Status updated: 21st Jan, 2018

https://www.understood.org/en/community-events/blogs/what-i-wish-id-known-sooner/2018/01/10/how-we-got-back-our-parenting-power-after-years-of-mismanaging-meltdowns?cm_ven=ExactTarget&cm_cat=011618_EnglishNewsletter&cm_pla=All+Subscribers&cm_ite=https%3a%2f%2fwww.understood.org%2fen%2fcommunity-events%2fblogs%2fwhat-i-wish-id-known-sooner%2f2018%2f01%2f10%2fhow-we-got-back-our-parenting-power-after-years-of-mismanaging-meltdowns&cm_lm=alawlor4@gmail.com&cm_ainfo=&utm_campaign=newsletter&utm_source=generalnews&utm_medium=email&utm_content=011618_EnglishNewsletter&&&&

Status updated: 21st Jan, 2018

A group of researchers and physicians who specialize in conditions related to the deletion and/or duplication in the chromosomal region 22q11.2 and their underlying biology.
http://www.22qsociety.org/

Status updated: 21st Jan, 2018

"Chromosome 22q11.2 deletion syndrome (22q11.2DS) is a genetic syndrome that may present with hypocalcemia due to primary hypoparathyroidism (PH) at any age. We report a new diagnosis of 22q11.2DS in a 57-year-old man who presented with symptomatic hypocalcemia. It is important to consider genetic causes of hypocalcemia due to PH regardless of age."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763278/

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RT @PandasPans: Great collaboration....progress in #cypmh is the greatest thing to come from this #PANS Thank you to all of you who oiled t…

Thu Jan 18 19:26:28 - 0 Favorite

RT @ehospital1: The first UK protocol for PANS & PANDAS is almost here after a very successful meeting of the UK PANS & PANDAS physicians n…

Thu Jan 18 19:26:19 - 0 Favorite

Thanks to all involved in making this happen. Onwards and upwards for PANDAS/PANS awareness and treatment! https://t.co/vJdKU79Y91

Thu Jan 18 18:47:30 - 4 Favorite

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Thu Jan 18 08:57:10 - 0 Favorite

The second UK led Pandas Physician’s Network meeting will take place in Leeds tomorrow. Thanks to Tim Ubhi and... https://t.co/lRgGBXJaJC

Wed Jan 17 16:44:48 - 1 Favorite

Awareness in Wisconsin #pandas #pans https://t.co/s97dq7vGMi

Wed Jan 17 13:28:21 - 1 Favorite

By definition, PANDAS/PANS has an episodic course. That means that there are ups and downs. Just when you think... https://t.co/MD5fXEXz1b

Mon Jan 15 18:10:45 - 0 Favorite

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