Jennifer's Story (NE UCEDD/LEND)

This story was written by Janet Miller, a respite care associate at the Munroe-Meyer Institute.

June 3, 2017

My daughter, Jennifer, is a lovely 40-year-old woman with Down syndrome.

For many years, she excelled in both school and employment. She was fortunate to have had many opportunities to participate in regular education classes. Additionally, she began her work career at age 17 at a Wendy's restaurant - her job choice was due in part for her interest in Dave Thomas and adoption.

Jennifer was employed at Wendy's for more 14 years, commuting by using public transportation. She also volunteered for Mercy Care Center, taking a beverage cart to patient rooms, until it closed.
Jennifer was very proud of her accomplishments and took great pride in her work. She worked hard to become Employee of the Month!

When Jennifer reached her early 30s, we started witnessing changes in her behavior. She was diagnosed with obsessive/compulsive disorder, and her obsessions escalated so severely that she was admitted for a weeklong evaluation in a psychiatric ward. These behavioral changes eventually cost her job, the beginning of a spiral that is still affecting our family.

Her obsessive behaviors forced us to seek residential options for her outside of Omaha, hoping to break the self-destructive cycle she was trapped in. She did spend a few years doing significantly better in a small town just outside of Omaha.

As time went on, however, additional, more aggressive behaviors began to surface, matched with increasing levels of depression. Physicians started her on a series of mood-altering medications, some of which we believe were damaging to her.

Her skills in daily living began to decline, as well as her interest in personal hygiene. It became obvious that professionals needed to start tracking Jennifer's skill declines. This did not happen, however, and my husband and I determined that Jennifer needed to return to Omaha to seek additional medical attention, as well as a diagnosis to determine the cause of these frightening changes.

Our first step was to schedule an appointment for a geriatric evaluation to determine Jennifer's condition. The process was frustrating, time-consuming and discouraging - many places only wanted to deal with people over the age of 55.

After the initial evaluation, MRI and neurological testing, we found Jennifer did, in fact, have early onset Alzheimer's. The onset, we were told, was probably when she first started experiencing the severe behavioral changes some six years prior to diagnosis.

We explored whether Jennifer could participate locally in any clinical trials on persons with Down syndrome experiencing Alzheimer's disease. But we found none, and again, most places contacted did not work with anyone under the age of 55. Due to the limited number of individuals with Down syndrome diagnosed with early onset Alzheimer's, it has been difficult to meet other families going through this long and painful journey.

Since Jennifer's diagnosis, we have experienced several setbacks in residential services for her. She was placed in one setting that claimed to be able to care for her unique behavioral needs, but this fell apart in a very short time. At the next place, where she stayed about a year, staff members believed that changes in her skills (such as falling and incontinence) were "behaviors" and not conditions related to having Alzheimer's disease. They also showed very little concern of Jennifer's increased need for sleeping, which for her was unusual enough to alarm us. So another change needed to be made, and we chose to move Jennifer into an extended family home. She had been their only 17 days when the family teachers reached out to us with their own concerns about the amount of time that Jennifer was sleeping and their inability to wake her.

Jennifer was admitted to the hospital on Sept. 23, 2016, for a four-day stay during which she had no real idea of what was happening to her. She returned home only to be back in the hospital in a day or two. This time, the physicians ran a two-day EEG test that showed significant brain abnormalities and seizure activity (the non-convulsive type). When seizure medications were started, she began to show significant side effects - we are currently beginning her fourth seizure medication. Due to these medication issues, Jennifer was either in a hospital or rehabilitation care facility since Sept. 23. Jennifer was no longer able to return to her extended family home and since January, 2017 has been residing in the medical service unit offered through Mosaic, one of the developmental disabilities provider agencies.

I want to encourage family caregivers to seek early diagnosis to determine causes of behavioral changes, especially for individuals with Down syndrome. While early onset Alzheimer's disorder diagnoses are relatively rare, Alzheimer's has been found to be more prevalent in individuals with Down syndrome.

As a family caregiver of a person with Alzheimer's disease, I can attest to the great deal of stress this can cause as we ride this roller coaster ride. This stress can lead to our own physical decline and emotional exhaustion. It is difficult, but imperative that we keep our own health in check and seek out support. If you are a family caregiver in this situation or know of someone is, they can contact Respite Across the Lifespan at 402-559-5732 to get assistance in locating a respite care provider to offer short-term relief for the family caregiver.

Janet, who has become an affiliate trainer in the dementia care curriculum for persons with intellectual and developmental disabilities, will be starting an education/support group for family caregivers who have adult loved ones with intellectual disabilities, such as Down syndrome. This group will be for those who suspect their loved ones may be on the journey into Alzheimer's or other types of dementia or those that already have received the diagnosis. For information on the support group, contact Janet at 402-639-8037 or at jlmiller12@cox.net.


Debugging Information
ColdFusion Server Standard 9,0,0,251028
Template /template/news.cfm
Time Stamp 20-Jul-18 10:49 AM
Locale English (US)
User Agent CCBot/2.0 (http://commoncrawl.org/faq/)
Remote IP 54.162.128.159
Host Name 54.162.128.159


Execution Time

Total Time Avg Time Count Template
199 ms 199 ms 1 top level E:\www\aauapweb\aucd\template\news.cfm
24 ms 24 ms 1 E:/www/aauapweb/aucd/Application.cfm
17 ms 17 ms 1 E:/www/aauapweb/aucd/template/header_public.cfm
14 ms 14 ms 1 E:/www/aauapweb/aucd/template/qry_menu.cfm
10 ms 10 ms 1 E:/www/aauapweb/aucd/template/inc_header.cfm
6 ms 6 ms 1 E:/www/aauapweb/aucd/template/footer_public.cfm
5 ms 5 ms 1 E:/www/aauapweb/aucd/template/common.cfm
3 ms 3 ms 1 E:/www/aauapweb/aucd/template/ct_sidebar.cfm
3 ms 3 ms 1 E:/www/aauapweb/aucd/template/inc_fourth.cfm
1 ms 1 ms 1 E:/www/aauapweb/aucd/include/body.cfm
1 ms 1 ms 1 E:/www/aauapweb/aucd/template/inc_leftnav.cfm
1 ms 1 ms 1 E:/www/aauapweb/aucd/template/inc_nav.cfm
0 ms 0 ms 1 E:/www/aauapweb/aucd/include/cmsview.cfm
0 ms 0 ms 1 E:/www/aauapweb/aucd/template/ct_breadcrumbs.cfm
0 ms 0 ms 1 E:/www/aauapweb/aucd/template/ct_logpage.cfm
0 ms 0 ms 1 E:/www/aauapweb/aucd/template/ct_session.cfm
0 ms 0 ms 1 E:/www/aauapweb/aucd/template/inc_footer.cfm
0 ms 0 ms 2 E:/www/aauapweb/aucd/template/udf.cfm
2 ms  STARTUP, PARSING, COMPILING, LOADING, & SHUTDOWN
225 ms  TOTAL EXECUTION TIME
red = over 250 ms average execution time


SQL Queries

qry_config (Datasource=aucd, Time=1ms, Records=88) in E:\www\aauapweb\aucd\template\common.cfm @ 10:49:57.057
	SELECT name, value FROM config
	WHERE
		
		host = 'remote' OR host = '' OR host is null
		
lang (Datasource=aucd, Time=1ms, Records=0) in E:\www\aauapweb\aucd\template\common.cfm @ 10:49:57.057
SELECT id, description FROM code WHERE name = 'content_language' ORDER BY orderby
page (Datasource=aucd, Time=2ms, Records=1) in E:\www\aauapweb\aucd\template\qry_menu.cfm @ 10:49:57.057
SELECT page.page_id, page.page_section, page.page_title, page.hide_search, page.hide_navigation,
	page.owner, page.template, page.browser_title, page.meta_description, page.page_filename,
	CASE WHEN ggparent.page_id IS NOT NULL THEN ggparent.page_title
		WHEN gparent.page_id IS NOT NULL THEN gparent.page_title
		WHEN parent.page_id IS NOT NULL THEN parent.page_title
		ELSE page.page_title END AS section_name,
	CASE WHEN ggparent.page_id IS NOT NULL THEN ggparent.page_id
		WHEN gparent.page_id IS NOT NULL THEN gparent.page_id
		WHEN parent.page_id IS NOT NULL THEN parent.page_id
		ELSE page.page_id END AS section_id,
	CASE WHEN ggparent.page_id IS NOT NULL THEN URL('',ggparent.page_filename,ggparent.page_id)
		WHEN gparent.page_id IS NOT NULL THEN URL('',gparent.page_filename,gparent.page_id)
		WHEN parent.page_id IS NOT NULL THEN URL('',parent.page_filename,parent.page_id)
		ELSE URL('',page.page_filename,page.page_id) END AS section_filename,
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	gparent.page_title AS gparent_name, gparent.page_id AS gparent_id,
	gparent.page_filename AS gparent_filename,
	parent.page_title AS parent_name, parent.page_id AS parent_id,
	parent.page_filename AS parent_filename
FROM page LEFT JOIN page AS parent ON page.page_section = parent.page_id
	LEFT JOIN page AS gparent ON parent.page_section = gparent.page_id
	LEFT JOIN page AS ggparent ON gparent.page_section = ggparent.page_id
WHERE
	
		page.page_filename like '%template/news.cfm%' /* 5 */
	
	AND page.template NOT IN ('ITAC','NGSD','ECP')
	
		AND (page.IsTraineeSitePage = 0 or page.IsTraineeSitePage is null)
	
ORDER BY page_id
getrole (Datasource=aucd, Time=0ms, Records=1) in E:\www\aauapweb\aucd\template\qry_menu.cfm @ 10:49:57.057
	SELECT code.code
	FROM link_page_role INNER JOIN code ON link_page_role.code_id = code.id
	WHERE fk_id = 806 
parentinfo (Datasource=aucd, Time=1ms, Records=1) in E:\www\aauapweb\aucd\template\qry_menu.cfm @ 10:49:57.057
SELECT page.page_id, page.page_section, page.template, page.page_title,
	CASE WHEN ggparent.page_id IS NOT NULL THEN ggparent.page_title
		WHEN gparent.page_id IS NOT NULL THEN gparent.page_title
		WHEN parent.page_id IS NOT NULL THEN parent.page_title
		ELSE page.page_title END AS section_name,
	CASE WHEN ggparent.page_id IS NOT NULL THEN ggparent.page_id
		WHEN gparent.page_id IS NOT NULL THEN gparent.page_id
		WHEN parent.page_id IS NOT NULL THEN parent.page_id
		ELSE page.page_id END AS section_id,
	CASE WHEN ggparent.page_id IS NOT NULL THEN URL('',ggparent.page_filename,ggparent.page_id)
		WHEN gparent.page_id IS NOT NULL THEN URL('',gparent.page_filename,gparent.page_id)
		WHEN parent.page_id IS NOT NULL THEN URL('',parent.page_filename,parent.page_id)
		ELSE URL('',page.page_filename,page.page_id) END AS section_filename,
	gparent.page_title AS gparent_name, gparent.page_id AS gparent_id,
	gparent.page_filename AS gparent_filename,
	parent.page_title AS parent_name, parent.page_id AS parent_id,
	parent.page_filename AS parent_filename
FROM page LEFT JOIN page AS parent ON page.page_section = parent.page_id
	LEFT JOIN page AS gparent ON parent.page_section = gparent.page_id
	LEFT JOIN page AS ggparent ON gparent.page_section = ggparent.page_id
WHERE
	
	page.page_id = 964 
qry_menutop (Datasource=aucd, Time=8ms, Records=90) in E:\www\aauapweb\aucd\template\qry_menu.cfm @ 10:49:57.057
	SELECT page.page_id, page.page_title, page.page_section, page.orderby, page.meta_description,
		ifnull(parent.page_title,page.page_title) AS section_name,
		URL('',page.page_filename,page.page_id) AS page_filename
	FROM page LEFT JOIN page AS parent ON page.page_section = parent.page_id
	WHERE ifnull(page.hide_navigation,0) = 0 AND page.live = 1 AND
		parent.page_section is null
		
		AND page.orderby <= 70000
		AND (parent.page_id in (2,3,25,26,27,28,1,507,489) or
			(parent.page_id is null and page.page_id <> 514))
		AND (SELECT COUNT(*) FROM link_page_role WHERE fk_id = page.page_id AND code_id = 113) > 0
		
			AND (page.IsTraineeSitePage = 0 or page.IsTraineeSitePage is null)
		
		 
	ORDER BY page.orderby
getnews (Datasource=aucd, Time=1ms, Records=1) in E:\www\aauapweb\aucd\template\news.cfm @ 10:49:57.057
SELECT 	news.*, code.name
FROM 	news
	LEFT JOIN code ON news.type = code.id
WHERE 	news_id = 12878 
author (Datasource=aucd, Time=1ms, Records=0) in E:\www\aauapweb\aucd\template\news.cfm @ 10:49:57.057
SELECT first_name, last_name, title, email, phone
FROM person INNER JOIN link_news_person ON person.person_id = link_news_person.person_id
WHERE link_news_person.news_id = 12878 
parentpage (Datasource=aucd, Time=1ms, Records=1) in E:\www\aauapweb\aucd\template\inc_header.cfm @ 10:49:57.057
	SELECT page.page_id, page.page_section, page.header_image,
		CASE WHEN gparent.page_id IS NOT NULL THEN gparent.page_title 
			WHEN parent.page_id IS NOT NULL THEN parent.page_title
			ELSE page.page_title END AS section_name,
		CASE WHEN gparent.page_id IS NOT NULL THEN gparent.page_id 
			WHEN parent.page_id IS NOT NULL THEN parent.page_id
			ELSE page.page_id END AS section_id,
		CASE WHEN gparent.page_id IS NOT NULL THEN gparent.page_filename 
			WHEN parent.page_id IS NOT NULL THEN parent.page_filename
			ELSE page.page_filename END AS section_filename
	FROM page LEFT JOIN page AS parent ON page.page_section = parent.page_id
		LEFT JOIN page AS gparent ON parent.page_section = gparent.page_id
	WHERE page.page_id = 
		964 
submenu (Datasource=aucd, Time=3ms, Records=5) in E:\www\aauapweb\aucd\template\inc_header.cfm @ 10:49:57.057
SELECT page.page_id, page.page_title, page.orderby, 0 AS sub,
	URL('',page.page_filename,page.page_id) AS page_filename
FROM page
WHERE page.live = 1 AND ifnull(page.hide_navigation,0)=0 
	
		AND ifnull(page.page_section,0) = 26 
UNION
SELECT page_id, page_title, orderby, 1 AS sub,
	URL('',child.page_filename,child.page_id) AS page_filename
FROM page AS child
WHERE live = 1 AND ifnull(hide_navigation,0)=0 AND
	
	ifnull(page_section,0) = 964 
ORDER BY 3,2
menu_network (Datasource=, Time=2ms, Records=0) in E:\www\aauapweb\aucd\template\inc_header.cfm @ 10:49:57.057
SELECT * FROM qry_menutop
WHERE section_name = 'Network Resources' AND page_section > 0 AND page_filename not like '%nirs%'
ORDER BY orderby
menu_home (Datasource=, Time=1ms, Records=0) in E:\www\aauapweb\aucd\template\inc_header.cfm @ 10:49:57.057
SELECT * FROM qry_menutop
WHERE section_name = 'Home' AND page_section > 0
ORDER BY orderby
issub (Datasource=, Time=1ms, Records=1) in E:\www\aauapweb\aucd\template\inc_fourth.cfm @ 10:49:57.057
	SELECT sub FROM submenu
	WHERE page_id = 964 
fourth (Datasource=aucd, Time=0ms, Records=0) in E:\www\aauapweb\aucd\template\inc_fourth.cfm @ 10:49:57.057
	SELECT page.page_id, page.page_title, page.orderby,
		CASE WHEN ifnull(page.page_filename,'') <> '' AND locate('?',page.page_filename) > 0
		THEN concat(page.page_filename,'&parent=',page.page_section)
		WHEN ifnull(page.page_filename,'') <> '' AND locate('?',page.page_filename) = 0
		THEN concat(page.page_filename,'?parent=',page.page_section)
		ELSE concat('template/page.cfm?id=',page.page_id,'&parent=',page.page_section) 
		END AS page_filename
	FROM page
	WHERE
		
		1=2
		
	ORDER BY orderby
	
related (Datasource=aucd, Time=0ms, Records=0) in E:\www\aauapweb\aucd\include\body.cfm @ 10:49:57.057
SELECT page_module.link_id, page_type, page_module.title, page_module.orderby,
	page_subtype, page_topic, page_layout, page_criteria, replace(module.type,' ','') AS type,
	module.subtype, rssaddress, topic.topic_title, replace(page_module.custom,',',' ') as custom,
	'' AS rss,
	
	concat_ws(',',page_module.detail1_id,page_module.detail2_id,page_module.detail3_id) AS detail_id
	
FROM page_module INNER JOIN module ON page_module.page_type = module.type AND (module.sidebar = 0 OR module.sidebar is null)
	LEFT JOIN topic ON page_module.page_topic = topic.topic_id
WHERE
	
		page_id = 806 
ORDER BY page_module.orderby
related_sidebar (Datasource=aucd, Time=1ms, Records=0) in E:\www\aauapweb\aucd\template\ct_sidebar.cfm @ 10:49:57.057
SELECT sidebar_module.link_id, page_type, sidebar_module.title, sidebar_module.orderby,
	page_topic, page_subtype, page_layout, page_criteria, replace(module.type,' ','') AS type,
	module.subtype, rssaddress, topic.topic_title, sidebar_module.custom, sidebar_module.content,
	'' AS rss,
	
	concat_ws(',',sidebar_module.detail1_id,sidebar_module.detail2_id,sidebar_module.detail3_id) AS detail_id
	
FROM sidebar_module INNER JOIN module ON sidebar_module.page_type = module.type AND module.sidebar = 1
	LEFT JOIN topic ON sidebar_module.page_topic = topic.topic_id
WHERE page_id = 806 
	AND position = 'R'
	
ORDER BY sidebar_module.orderby


Scope Variables

CGI Variables:
AUTH_PASSWORD=
AUTH_TYPE=
AUTH_USER=
CERT_COOKIE=
CERT_FLAGS=
CERT_ISSUER=
CERT_KEYSIZE=256
CERT_SECRETKEYSIZE=2048
CERT_SERIALNUMBER=
CERT_SERVER_ISSUER=C=GB, S=Greater Manchester, L=Salford, O=COMODO CA Limited, CN=COMODO RSA Domain Validation Secure Server CA
CERT_SERVER_SUBJECT=OU=Domain Control Validated, OU=EssentialSSL, CN=www.aucd.org
CERT_SUBJECT=
CF_TEMPLATE_PATH=E:\www\aauapweb\aucd\template\news.cfm
CONTENT_LENGTH=
CONTENT_TYPE=
CONTEXT_PATH=
GATEWAY_INTERFACE=CGI/1.1
HTTPS=on
HTTPS_KEYSIZE=256
HTTPS_SECRETKEYSIZE=2048
HTTPS_SERVER_ISSUER=C=GB, S=Greater Manchester, L=Salford, O=COMODO CA Limited, CN=COMODO RSA Domain Validation Secure Server CA
HTTPS_SERVER_SUBJECT=OU=Domain Control Validated, OU=EssentialSSL, CN=www.aucd.org
HTTP_ACCEPT=text/html,application/xhtml+xml,application/xml;q=0.9,*/*;q=0.8
HTTP_ACCEPT_ENCODING=x-gzip, gzip, deflate
HTTP_ACCEPT_LANGUAGE=
HTTP_CONNECTION=close
HTTP_COOKIE=
HTTP_HOST=www.aucd.org
HTTP_REFERER=
HTTP_USER_AGENT=CCBot/2.0 (http://commoncrawl.org/faq/)
PATH_INFO=/template/news.cfm
PATH_TRANSLATED=E:\www\aauapweb\aucd\template\news.cfm
QUERY_STRING=news_id=12878&parent=964&parent_title=View%20All%20News&url=/template/page.cfm?id%3D964
REMOTE_ADDR=54.162.128.159
REMOTE_HOST=54.162.128.159
REMOTE_USER=
REQUEST_METHOD=GET
SCRIPT_NAME=/template/news.cfm
SERVER_NAME=www.aucd.org
SERVER_PORT=443
SERVER_PORT_SECURE=1
SERVER_PROTOCOL=HTTP/1.1
SERVER_SOFTWARE=Microsoft-IIS/7.5
WEB_SERVER_API=
Client Variables:
cfid=22758074
cftoken=32979670
hitcount=1
lastvisit={ts '2018-07-20 10:49:57'}
timecreated={ts '2018-07-20 10:49:57'}
urltoken=CFID=22758074&CFTOKEN=32979670
Cookie Variables:
CFID=22758074
CFTOKEN=32979670
Session Variables:
cfg_admin_directory=/aucd_admin/
cfg_article_url=../resources/digest/issue.cfm?article_id=
cfg_authentication=HTML
cfg_client_full_name=AUCD
cfg_client_id=247
cfg_client_short_name=AUCD
cfg_database_type=mysql
cfg_dateformat=m/d/yyyy
cfg_doc_extension=doc,pdf,xls,txt,wpd,rtf,jpg,jpeg,gif,bmp,png,ppt,pps,mp3
cfg_doc_path=/docs/
cfg_ecp_feedback=bkaufman@AUCD.ORG
cfg_ecp_share=bkaufman@AUCD.ORG
cfg_editor_path=/tiny_mce/
cfg_email_actearlynews_submission=agriffen@AUCD.ORG, oklimova@aucd.org
cfg_email_council_cis=
cfg_email_council_coca=
cfg_email_council_core=
cfg_email_council_mcc=oklimova@aucd.org
cfg_email_council_ncedc=
cfg_email_council_ntdc=
cfg_email_developments_submission=lvaldez@aucd.org
cfg_email_digest_submission=acostalas@AUCD.ORG
cfg_email_hdd_submission=jminor@aucd.org
cfg_email_lend_application_submission=jperry@AUCD.ORG
cfg_email_pmu_submission=ynikola-lisa@aucd.org
cfg_email_spotlight_submission=cpariseau@aucd.org
cfg_email_stimulus=oklimova@aucd.org
cfg_email_website_feedback=oklimova@aucd.org
cfg_encoding=ISO-8859-1
cfg_evaluation_review=agriffen@AUCD.ORG
cfg_has_article_dept=Yes
cfg_has_article_issue=Yes
cfg_has_article_issuedept=Yes
cfg_has_article_type=0
cfg_has_crm=No
cfg_has_document=0
cfg_has_event_topic=Yes
cfg_has_feature_home_page=0
cfg_has_friendly_urls=No
cfg_has_issue_number=Yes
cfg_has_issue_summary=Yes
cfg_has_issue_volume=Yes
cfg_has_module_heading=Yes
cfg_has_new_topic=Yes
cfg_has_news_author=1
cfg_has_news_topic=Yes
cfg_has_person_address=0
cfg_has_person_board=Yes
cfg_has_person_country=0
cfg_has_person_custom=Yes
cfg_has_person_department=1
cfg_has_person_fax=Yes
cfg_has_person_photo=Yes
cfg_has_photo_expiration=0
cfg_has_sidebar=0
cfg_has_topic_parent_id=0
cfg_has_xml_import=0
cfg_live_default=No
cfg_log_number_of_months=4
cfg_mail_from=aucdinfo@aucd.org
cfg_mail_server=
cfg_module_detail_options=3
cfg_ngsd_about=681
cfg_ngsd_email_notification=oklimova@aucd.org,drudolph@aucd.org,beckmanncc@umkc.edu,spalmer@ku.edu,walkerla@umkc.edu,ericecook@sbcglobal.net,gottog@umkc.edu
cfg_ngsd_events=685
cfg_ngsd_join_listserve=687
cfg_ngsd_links=686
cfg_ngsd_news=684
cfg_ngsd_resources=683
cfg_ngsd_topics=682
cfg_ngsd_training=680
cfg_paging_count_landing=3
cfg_paging_count_list=15
cfg_path=
cfg_path_include=
cfg_paths_relative_to=root
cfg_person_notes_label=Notes
cfg_photo_album_view=JavaScript:openNewWindow('../template/slideshow.cfm?album_id={{id}}',800,750);
cfg_photo_path=/images2/
cfg_remember_login=1
cfg_rtoi_year=2012
cfg_search_resilience=per session
cfg_show_error_details=0
cfg_sidebar_positions=Left,Right
cfg_specific_items_days=730
cfg_specific_items_sort=Name
cfg_title=Content Management System
cfg_type_link_to=code
cfid=22758074
cftoken=32979670
sessionid=AUCDWEBSITE_22758074_32979670
urltoken=CFID=22758074&CFTOKEN=32979670
URL Parameters:
news_id=12878
parent=964
parent_title=View All News
url=/template/page.cfm?id=964
Debug Rendering Time: 35 ms