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YOUR AH AH Th Duri mor Lynn com whaI hoand Lyn supp foun Afte the gon jam inte Fam AHC shaclin to p R ALTERNAT O HCF in A HCF Fa he Best O ing the meet re years as n remarked, munity. Mt needs to be pe that in th potential tre nn has deport and has ndation is toer months an 2016 Famil ne, but what mmed packeerest to every milies learne C, but they red their ins ical trials wparticipate. Look for p TING HEMIPLE One ACTION amily M One Yet ting, Lynn E president , “I am hono y daughter e done for he he next thre eatments rea voted over s been a par day. Thanks 2000 Tow nd months o ly Meeting h a meeting it d agenda w yone. ed about the also learne sights in the hile listening pictures an EGIA OF CHIL Mis N Meetin t! Egan was e t of the AHCF ored to cont r is my ins er and for al e years, we w ady for clinic r 24 year rt of building Lynn for yo wn Center of preparatio has come an t was! It had with topics e latest rese ed alterna roundtables g intently to nd the pres LDHOOD FOU ssion www.a ng: elected to s F. tinue to ser spiration a ll those affec will have so cal trials”. rs in provid g and shapi our service! Suite 190 These effort Mars famil We a kid’s helpf takin To ev and m on nd d a of earch and ho ative therap s. They learn o the hard fa sentations UNDATION NE n: En ahckids.or serve three rve the AHC and I will do ct with AHC. ome answers ding family ng what the 00 Southf e meetings ts of the ho szalek plan lies, speaker also wish to room and th ful, and the ng great ca veryone who making every ow to mana pies and ho ned the imp acts of what i from the m EWSLETTER nd A rg e C o . s y e field, Mich would not ost family. I nned an am rs, and physi thank all o hroughout th e rock stars are of our k o helped, tha yone feel at age some ow to care f portance o it will take t meeting to AHC higan 4807 be possible In Indianap mazing exper icians. of the volunt he meeting. of the mee kiddos! ank you for home in Ind of the sym for themselv f a Natural to get there a be up on o A C! 75 e without t polis, Laura rience for th teers who h You were p eting! Than taking on th diana. mptoms ass ves as the c l History D and everyon our website UGUST 201 the amazing a and Josh he children elped in the patient, kind nk you for his challenge sociated wit caregiver an Database fo ne was invite e soon. 6 g h , e , r e th nd or ed
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O Mission End A HC

Mar 17, 2022

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Page 1: O Mission End A HC

YOUR

AHAHTh

Durimor LynncomwhatI hopand Lynsuppfoun

  

 

 

 

 

 

Aftethe gonjaminte

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ing the meetre years as

n remarked,munity. Myt needs to bepe that in th potential tre

nn has devport and hasndation is tod

er months an 2016 Famil

ne, but what mmed packederest to every

milies learneC, but they red their insical trials wh

participate.

Look for p

TINGHEMIPLE

One

ACTIONamily MOne Yet

ting, Lynn E president

, “I am honoy daughtere done for hehe next threeatments rea

voted overs been a parday. Thanks

2000 Tow

nd months oly Meeting ha meeting itd agenda wyone.

ed about the also learnesights in the hile listening

pictures an

EGIAOFCHIL

Mis

N Meetint!

Egan was et of the AHCF

ored to contr is my inser and for ale years, we wady for clinic

r 24 yearrt of building Lynn for yo

wn Center ■

of preparatiohas come ant was! It hadwith topics

e latest reseed alterna roundtablesg intently to

nd the pres

LDHOODFOU

ssion

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ng:

elected to sF.

tinue to serspiration all those affecwill have socal trials”.

rs in providg and shapi

our service!

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TheseeffortMarsfamil We akid’s helpftakin To evand m

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sentations

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ahckids.or

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ding familyng what the

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e meetings ts of the hoszalek planlies, speaker

also wish to room and thful, and theng great ca

veryone whomaking every

ow to manapies and honed the impacts of what i

from the m

EWSLETTER

nd A

rg

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e rock stars are of our k

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age some ow to care fportance oit will take t

meeting to

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higan 4807

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mazing expericians.

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ank you for home in Ind

of the symfor themselvf a Natural

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e without tpolis, Laurarience for th

teers who h You were peting! Than

taking on thdiana.

mptoms assves as the cl History Dand everyon

our website

UGUST 201

the amazinga and Joshhe children

elped in thepatient, kindnk you for

his challenge

sociated witcaregiver anDatabase fone was invite

e soon.

6

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Page 2: O Mission End A HC

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Page 3: O Mission End A HC

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Page 4: O Mission End A HC
Page 5: O Mission End A HC

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