cdkl5
Daily update ⋅ June 30, 2017
NEWS
FDA Grants Orphan Drug Designation for Ganaxolone in CDKL5 Disorder
GlobeNewswire (press release)
CDKL5 Disorder is a serious and rare genetic disorder that is caused by a mutation of the cyclin-dependent kinase-like 5 (CDKL5) gene, located on ...
FDA Grants Orphan Drug Designation for Ganaxolone in CDKL5 Disorder
Nasdaq
"There are no approved therapies for children with CDKL5 Disorder, and a great need for new treatment options that can control both the seizures and ...
BRIEF-FDA grants Orphan Drug Designation for Ganaxolone in CDKL5 disorder
Reuters
BOSTON, June 29 The U.S. Internal Revenue Service is probing whether a patient-assistance charity wrongly gave a benefit to its pharmaceutical
WEB
FDA Grants Orphan Drug Designation for Ganaxolone in CDKL5 Disorder
Euroinvestor
CDKL5 Disorder is a serious and rare genetic disorder that is caused by a mutation of the cyclin-dependent kinase-like 5 (CDKL5) gene, located on ...
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International Foundation for CDKL5 Research Spring 2014
CDKL5 VOICES Family News | 2014 | Volume 2
CDKL5 Awareness Month
Do you know what the IFCR Starfish represents? To us, this symbol reminds to keep going and never give up. IFCR's starfish symbol was inspired by The S tar Thrower by Loren Eiseley (1907-1977), and serves as a powerful reminder that we each have within us the power to make a difference in the lives of others - today. It is a refusal to accept failure, a reminder that by working together we can persevere against the odds. %
June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness Day. It will serve as a time for a global community to join together to bring awareness to CDKL5 Disorders. Raising awareness about the condition is vital to funding research that will provide treatments, ultimately a cure. IFCR urges families affected by a CDKL5 Disorder to Inspire, Inform and Initiate during June and on June 17th, in particular. %
Quarterly Quote
"Focus on remedies, not faults." ~Jack Nicklaus
Upcoming Events
• Hope is the Key, the 2nd International CDKL5 Family Conference in Washington D.C. June 26-28, 2014
• Viv's Drive for a Cure, 6th Annual charity Golf Outing, Columbia Station, OH, May 17, 2014
• Hope Love Cure Avery Ride II, Old Saybrook, CT, June 1, 2014
• Miles for Mabel, Hurely, NY, June 14, 2014
• Strides for Starfish 5K, Lyndhurst, OH, July 12, 2014
• Century Ride in Alabama on October 11, 2014
• Toast to a Cure, Kentucky, October 17, 2014
• Give Charlie a Chance, Kentucky, TBA October 2014
www.cdkl5.com
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International Foundation for CDKL5 Research Spring 2014
Inspire: Turn homes, neighborhoods, businesses, public municipal buildings green for CDKL5 by replacing clear outdoor lighting with green bulbs. Share personal CDKL5 journeys through words, photos, music or art, and share it online. Encourage friends and family to spread awareness throughout their online and interpersonal networks. %
Inform: Utilize the IFCR-provided online tools such as printable awareness cards, posters, computer graphics, and videos to educate friends, family members, coworkers, local business patrons, therapists, and doctors about CDKL5 Disorders. Share IFCR’s story about how parents worked together to create a foundation that has funded research on treatments and a cure for their children and others affected by the disorder. Contact local neurologist offices and ask if you can sign them up for IFCR’s CDKL5 Research Times newsletters. %
Initiate: Make a direct impact on research. Organize a local fundraiser. Buy a gift from IFCR’s online store. Set up a monthly donation. Create a fundraising page at www.FirstGiving.com in a specific child’s honor and fulfill a goal utilizing the support of family and friends. For families of CDKL5 children, pledge to complete the International CDKL5 Registry Database Questionnaire. %
Get involved! For more ideas to get involved and Inspire, Inform, and Initiate, visit http://www.cdkl5.com/News-Events/CDKL5-Awareness%20.aspx%
International CDKL5 Disorder Database
The CDKL5 International Database is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate. Please visit www.cdkl5.com/ Research/Database.aspx for detailed information on motor development, gastrointestinal problems and epilepsy types and treatments identified in the CDKL5 population to date. Here is a direct link to the database http:// cdkl5.childhealthresearch.org.au/ please consider completing the questioner if you haven’t already done so.%
CDKL5 Centers of Excellence Locations
• Children's Hospital Colorado Dr. Tim Benke (720) 777-4363 %
• Boston Children's Hospital Dr. Walter Kaufmann (617)355-8994%
• Stay tuned for the announcement of a new CDKL5 Center of Excellence location this summer!
Keepsake Journal Tributes
If you are unable to attend the 2014 Family Conference in June we would love to have you join us in spirit. One opportunity to
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International Foundation for CDKL5 Research Spring 2014
honor your child, lend support, or thank your friends and family is to purchase an ad in the conference Keepsake Journal. It is included in the conference program and reaches all conference attendees, esteemed speakers, exhibitors, sponsors, and supporters. It includes conference speaker biographies, program schedule, as well as the Friends and Family Keepsake portion. Should you purchase an ad, you will also receive a hardcopy of the program via mail. The program will be made available digitally to everyone after the conference. You must submit your ad no later than MAY 23, 2014. %
For more information please visit http://cdkl5.com/UserFiles/files/KEEPSAKE%20JOURNAL
%20Specifications.pdf%
CDKL5 AWARENESS STARTS WITH YOUR OWN NEIGHBORHOOD
A fresh idea for this year's CDKL5 Awareness Month is to make your neighbors aware with a yard sign that proudly proclaims, "Someone we love has a CDKL5 Disorder" and displays the CDKL5 Awareness image. IFCR is providing this free, downloadable, PDF file that can be printed at your local printer or office supply store. Staples is running a half-price special on 18" x 12" yard signs with a lawn sign stand for as low as $15.49 through May 31st. Maybe your child's school, church, or your place of employment would also be willing to show their support. Inspire, Inform, Initiate! Visit cdkl5.com for a printable file. %
www.cdkl5.com
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International Foundation for CDKL5 Research Spring 2014
Advocate? or Diplomat? !
by Kathie Snow
Advocate: To speak in favor of; one who supports or defends a cause; one who pleads in another’s behalf, esp. a lawyer (Webster’s II New Riverside University Dictionary, 1988)
Diplomacy: The art or practice of conducting international relations, as in negotiating alliances, treaties, and agreements; tact and skill in dealing with people (Webster’s II New Riverside University Dictionary, 1988)
You and I—along with millions of others—may consider ourselves as advocates for disability issues. We speak out, take actions, and seek to positively influence disability affairs, in general, or the life of someone we care about, in particular. This is a good thing, right? I think so. %
Advocacy means different things to different people, and we each have our own unique ways of doing things. It seems, however, that many of us are not as successful as we’d like: I continue to hear too many horror stories from coast-to-coast. We may move from advocacy to full-fledged battles, and even if we “win,” we lose, too. While the “official loser” may be forced to meet our demands, we’ve made a lifelong enemy in the process. Since we have enough adversaries as it is, it seems prudent to spend the time and energy necessary to develop as many allies as possible! So perhaps we should consider moving beyond advocacy to diplomacy.%
The definitions above show the difference between the two. While we won’t be “conducting international relations,” we can achieve success by “negotiating alliances, treaties, and agreements.” But perhaps the most important part of the definition is “tact and skill in dealing with people.” This is what may be missing in our usual advocacy efforts.%
The most common example that comes to mind is the advocacy practiced by many parents in the public school arena, specifically during IEP (Individualized Education Program) meetings. When advocating during the IEP process, parents may make a huge, and often fatal, error: they forget that educators are people. Instead, parents (and/or other advocates) often see the IEP team as one unified body, rather than a collection of distinct and unique individuals, each of whom has his own set of experiences, attitudes, beliefs, as well as his own personality, separate and distinct from others. %
Granted, parents are members of the IEP team, and everyone on the team is supposed to be “on the same side.” As many parents know, however, the first disagreement between the parents and the group of educators may fracture the “team mentality,” creating an “us/them” atmosphere, which can lead to World War III. In the end, and regardless of who “wins,” the child ultimately pays the price for the actions of adults.%
If we practice diplomacy, however, using “tact and skill in dealing with people,” and if we develop allies and negotiate agreements, we’ll achieve different and better outcomes. The following suggestions pertain to parental advocacy in education, but they can be adapted to any situation.%
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International Foundation for CDKL5 Research
Spring 2014
If, at this moment, you’re so mad at the school you can’t see straight, think about this: would you run into the path of a speeding car to save your child’s life? The answer (I hope) is, “Yes!” So if you’re willing to risk your own life for your child’s, aren’t you willing to risk doing things differently with educators (or others) on behalf of your child? How much is your child’s present and future worth?%
If you’ve already been at war with educators (or others), the first diplomatic step is to make amends. This can be as simple and painless as saying, “I know we’ve had difficulties in the past, but I’m willing to do what it takes to have a good working relationship with you.” (If you’re gnashing your teeth at this, just remember: you’re doing this for your child! Get your ego out of the way!)%
The second diplomatic step (or the first if you haven’t yet been at war) is to maintain positive relationships with others, by using your common sense (and remembering what your mama and your kindergarten teacher taught you): be nice, play fair, treat others the way you want to be treated, and so forth. While these may sound trite, they work. And if others get down in the muck, let ’em, but don’t go down there yourself—you’ll just get dirty, too. Don’t take things personally and don’t retaliate.%
Go the extra mile (remember, this is all about your child) and do what it takes to change the dynamics
of tension-filled situations, and develop relationships with educators outside of the IEP process. Bring food to the IEP meeting, take a teacher to lunch, become president of the PTA (educators seldom say “no” to parents who are valuable allies of the school), thank people for their past efforts, and/or do whatever will improve/ maintain positive relationships.%
Third, be willing to negotiate. (Don’t forget: this is all about your child.) Eliminate the “win/lose” mentality and practice a “win/win” attitude. There’s no better way to turn an adversary into an ally. Be aware and respectful of another’s need to “save face.” Exchange rigidity for flexibility. Get rid of the “all or nothing” mentality. If you’re only offered half of what you want, take it, knowing you can go back later and negotiate for the other half. Isn’t half better than none? Instead of demanding or arguing, ask, “What will it take to...?” (Learn more about this particular technique in the “What Will It Take?” article.)%
With advocacy, we “speak in favor of” or “plead in another’s behalf.” With diplomacy, we use “tact and skill in dealing with people” and practice the “art” of “negotiating.” Which strategy will increase the number of your allies and decrease the number of adversaries? Which will lead to the outcomes you want? In the big drama of life, which role— advocate or diplomat—are you ready to play?%
Copyright 2002-13 Kathie Snow, All Rights Reserved, used with permission. Contact braveheartpress@msn.com
for reprint permission. Visit www.disabilityisnatural.com for new ways of thinking! %
Calling All 2nd International Family Conference Attendees
If you will be attending the 2014 Family Conference please bring an item for our Tricky Tray FUNdraiser. What is a Tricky Tray you ask? Participants purchase raffle tickets and place the tickets in canisters near the items they hope to win. One person can put as many tickets as they want in a given container to increase the odds of winning. The intent is for all participants to have a good time, perhaps win something too while supporting the IFCR!
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International Foundation for CDKL5 Research Spring 2014
CDKL5 AWARENESS MONTH EXTRA Will you help us raise CDKL5 Awareness in EVERY State with a Proclamation?
Last year was our inaugural June Awareness Month . We had many ideas surface, we hope to learn many more successes from you! We are pleased to report that both Colorado and North Carolina were granted a Proclamation in 2013. We'd love to capture the hearts of the remaining 48 states and anywhere abroad in 2014!
Constituents can request a letter or proclamation to commemorate special events from their local or state government offices. Requests usually will go through an internal review and approval process. As a result, it is necessary to submit your request at least two or three weeks prior to the date the letter or proclamation is needed. Proclamations can be issued for civic celebrations, non-profit organizations, and significant events with historical and/or unique importance to the citizens in your local area, or individuals who have made a significant contribution to society. %
How To Do It %
In order to expedite the proclamation in a timely manner, the following information is usually required: %
• Requestor must provide a draft text of the proclamation (see sample below) in the preferred format. %
• The purpose of the Proclamation: CDKL5 Awareness Day/Month %
• The date when the proclamation is needed %
• Brief history of CDKL5 %
• Requests should include the name and daytime telephone number/e-mail address of the contact person. %
!
!
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International Foundation for CDKL5 Research
Spring 2014
Sample Proclamation Draft
[City/State] of [City/State Name] %
Executive Department Office of the [Government Office Name] %
%
[Government Office City Name] %
% Resolution %
%
WHEREAS, CDKL5 Disorder is a rare and devastating neurological disorder that begins % in infancy, and %
%
WHEREAS, the children affected by CDKL5 suffer from severe seizures, % developmental delay, gastrointestinal complications, and the inability to walk, talk or % feed themselves, and %
%
WHEREAS, The need for widespread awareness and understanding of CDKL5 is critical % for meaningful research to continue so that the quality of their lives is improved, and that % hope for a brighter future is real, and %
%
WHEREAS, CDKL5 Awareness Day and CDKL5 Awareness month will be celebrated % annually, and is sponsored by the International Foundation for CDKL5 Research, who % supports research and ongoing awareness efforts, and %
%
NOW, THEREFORE I, (Name/title), [GOVERNMENT OFFICE TITLE] OF THE % [CITY/STATE] OF [CITY/STATE NAME], hereby proclaim the month of June as % CDKL5 Awareness month, and June 17 as CDKL5 Awareness Day, bringing hope %
to those families living with CDKL5 Disorder. And I call on all scientists and doctors to % support continued research on CDKL5, recognizing that advancements in care will mean % a brighter future for all those affected by CDKL5. %
%
On this ______day of June, 2014; %
%
[Name of government official] % [Government office title] % [!City/State] of [City/State Name]%
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International Foundation for CDKL5 Research
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Here is a list by state of where to request the letters:
!
Alabama % http://governor.alabama.gov/contact/contact_procs.aspx %
%
Alaska % http://gov.alaska.gov/parnell/services/constituent-relations/proclamations.html %
%
Arizona % http://azgovernor.gov/cs/Proclamations.asp %
%
Arkansas % http://governor.arkansas.gov/office/Pages/proclamationRequestGuidelines.aspx %
%
California %
Governor Jerry Brown % Attn. Executive Writers % c/o State Capitol, Suite 1173 % Sacramento, CA 95814 %
Fax: (916) 558-3160 %
%
Colorado % http://www.colorado.gov/cs/Satellite/GovHickenlooper/CBON/1249674957287# %
%
Connecticut % http://www.governor.ct.gov/malloy/cwp/view.asp?a=3998&q=479090 %
%
Delaware %
Contact Governor Jack Markell’s office: http://www.governor.delaware.gov/connect/index.shtml %
%
Florida % http://www.flgov.com/request_a_letter/ %
%
Georgia % http://gov.georgia.gov/00/channel_title/0,2094,78006749_78013077,00.html %
%
Hawaii % http://hawaii.gov/gov/contact/msg-comm-proc %
%
Idaho % http://gov.idaho.gov/mediacenter/proc/index.html %
%
Illinois %
Contact Governor Pat Quinn’s office: http://www2.illinois.gov/gov/Pages/ContacttheGovernor.aspx%
%
Indiana % http://www.in.gov/gov/2559.htm %
%
Iowa % https://governor.iowa.gov/constituent-services/proclamation-request/ %
%
Kansas % http://governor.ks.gov/serving-kansans/constituent-services/proclamation-guidelines %
%
Kentucky % http://governor.ky.gov/Lists/Proclamations/form.aspx?source=http://governor.ky.gov/office/Pages/ procformthanks.aspx%
%
Louisiana % http://www.managekeelson.com/websites/la2.gov/index.cfm?md=form&tmp=home&cfmid=299 %
%
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International Foundation for CDKL5 Research
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Maine % http://www.maine.gov/governor/lepage/citizen_services/request_proclamation.shtml %
%
Maryland % http://www.governor.maryland.gov/citations.asp %
%
Massachusetts % http://www.mass.gov/governor/constituentservices/recognition/#proclamation %
%
Michigan % http://www.michigan.gov/snyder/0,4668,7-277-57577_59874---,00.html %
%
Minnesota % http://mn.gov/governor/images/proclamation_request_form_2012.pdf %
%
Mississippi % http://www.governorbryant.com/requests/proclamation-request/ %
%
Missouri % http://governor.mo.gov/proclamations/ %
%
Montana %
The Governor does not do proclamations, but he does do letters of support. Email Steve Bullock at SBullock@mt.gov%
%
Nebraska % http://www.governor.nebraska.gov/proclamations/proclamation.html %
%
Nevada % http://gov.nv.gov/contact/proclamation/ %
%
New Hampshire: %
Send a request in writing to the Governor's Office at: % Governor Maggie Hassan %
State House %
107 North Main Street %
Concord, NH 03301 %
Or by e-mail at: governorhassan@nh.gov%
Please send requests at least two weeks in advance and include as much information as possible. %
%
New Jersey %
Online form: http://www.state.nj.us/cgi-bin/governor/govmail/govmail_1c_new.pl %
*In the Email Topic drop-down menu, select “requesting proclamation/special letter.” % %
New Mexico % http://governor.state.nm.us/Proclamations_1.aspx %
%
New York % http://www.governor.ny.gov/sl2/proclamationindex %
%
North Carolina % http://www.governor.state.nc.us/contact/certProcAward.aspx %
%
North Dakota % http://governor.nd.gov/contact-us %
%
Ohio % http://www.governor.ohio.gov/Contact/ContacttheGovernor.aspx %
*In Select Issue drop-down menu, select “requesting proclamation/special letter.” % %
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Oklahoma % https://www.ok.gov/triton/modules/formbuilder/form.php?
form_id=06f2c591e968592fd1c77e8387 4080933b60eb19edcdc602986eae9c12d826cb%
%
Oregon % http://cms.oregon.gov/gov/Pages/proclamation_guidelines.aspx %
% Pennsylvania %
Requests must be submitted in writing and should include detailed information about the type of greeting you are requesting, the date you will need to receive it, contact information and a mailing address to send the final document. Requests can be submitted via email to governor@state.pa.us, via fax to 717-772-8284, or via mail to the Governor's Correspondence Office, 508-E Main Capitol Building, Harrisburg, PA 17120. Contact the Governor's Correspondence Office at 717-787-5825 if you have additional questions about your request. %
%
Rhode Island % http://www.governor.ri.gov/faq/#6 %
%
South Carolina % http://governor.sc.gov/EXECUTIVEOFFICE/Pages/Proclamations.aspx %
%
S!outh Dakota % http://sd.gov/governor/contact.aspx %
Tennessee % http://www.tn.gov/governor/proclamation.shtml %
%
Texas %
1. Go to http://governor.state.tx.us/contact/ %
2. Click “I need assistance” and select. %
3. Complete required fields. Under issue click “Ceremonial item request.” % 4. Include request and draft proclamation in comment box. %
%
Utah % http://governor.utah.gov/declarations/ %
%
Vermont % http://governor.vermont.gov/contact-us/proclamation %
%
Virginia % http://www.governor.virginia.gov/OurCommonwealth/Proclamations/procRequest.cfm? %
%
W!ashington % https://fortress.wa.gov/es/governor/contact/proclamation%
West Virginia % http://www.governor.wv.gov/Pages/ProclamationRequestGuidelines.aspx %
%
W! isconsin %
Contact Governor Scott Walker: http://walker.wi.gov/Contact-Us %
Wyoming % h!ttp://governor.wy.gov/SiteCollectionDocuments/Proclamation%20Policy.pdf %
Hope * Love * Cure
www.cdkl5.com 10
CDKL5 VOICES Family News | 2014 | Volume 2
CDKL5 Awareness Month
Do you know what the IFCR Starfish represents? To us, this symbol reminds to keep going and never give up. IFCR's starfish symbol was inspired by The S tar Thrower by Loren Eiseley (1907-1977), and serves as a powerful reminder that we each have within us the power to make a difference in the lives of others - today. It is a refusal to accept failure, a reminder that by working together we can persevere against the odds. %
June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness Day. It will serve as a time for a global community to join together to bring awareness to CDKL5 Disorders. Raising awareness about the condition is vital to funding research that will provide treatments, ultimately a cure. IFCR urges families affected by a CDKL5 Disorder to Inspire, Inform and Initiate during June and on June 17th, in particular. %
Quarterly Quote
"Focus on remedies, not faults." ~Jack Nicklaus
Upcoming Events
• Hope is the Key, the 2nd International CDKL5 Family Conference in Washington D.C. June 26-28, 2014
• Viv's Drive for a Cure, 6th Annual charity Golf Outing, Columbia Station, OH, May 17, 2014
• Hope Love Cure Avery Ride II, Old Saybrook, CT, June 1, 2014
• Miles for Mabel, Hurely, NY, June 14, 2014
• Strides for Starfish 5K, Lyndhurst, OH, July 12, 2014
• Century Ride in Alabama on October 11, 2014
• Toast to a Cure, Kentucky, October 17, 2014
• Give Charlie a Chance, Kentucky, TBA October 2014
www.cdkl5.com
1
International Foundation for CDKL5 Research Spring 2014
Inspire: Turn homes, neighborhoods, businesses, public municipal buildings green for CDKL5 by replacing clear outdoor lighting with green bulbs. Share personal CDKL5 journeys through words, photos, music or art, and share it online. Encourage friends and family to spread awareness throughout their online and interpersonal networks. %
Inform: Utilize the IFCR-provided online tools such as printable awareness cards, posters, computer graphics, and videos to educate friends, family members, coworkers, local business patrons, therapists, and doctors about CDKL5 Disorders. Share IFCR’s story about how parents worked together to create a foundation that has funded research on treatments and a cure for their children and others affected by the disorder. Contact local neurologist offices and ask if you can sign them up for IFCR’s CDKL5 Research Times newsletters. %
Initiate: Make a direct impact on research. Organize a local fundraiser. Buy a gift from IFCR’s online store. Set up a monthly donation. Create a fundraising page at www.FirstGiving.com in a specific child’s honor and fulfill a goal utilizing the support of family and friends. For families of CDKL5 children, pledge to complete the International CDKL5 Registry Database Questionnaire. %
Get involved! For more ideas to get involved and Inspire, Inform, and Initiate, visit http://www.cdkl5.com/News-Events/CDKL5-Awareness%20.aspx%
International CDKL5 Disorder Database
The CDKL5 International Database is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate. Please visit www.cdkl5.com/ Research/Database.aspx for detailed information on motor development, gastrointestinal problems and epilepsy types and treatments identified in the CDKL5 population to date. Here is a direct link to the database http:// cdkl5.childhealthresearch.org.au/ please consider completing the questioner if you haven’t already done so.%
CDKL5 Centers of Excellence Locations
• Children's Hospital Colorado Dr. Tim Benke (720) 777-4363 %
• Boston Children's Hospital Dr. Walter Kaufmann (617)355-8994%
• Stay tuned for the announcement of a new CDKL5 Center of Excellence location this summer!
Keepsake Journal Tributes
If you are unable to attend the 2014 Family Conference in June we would love to have you join us in spirit. One opportunity to
www.cdkl5.com
2
International Foundation for CDKL5 Research Spring 2014
honor your child, lend support, or thank your friends and family is to purchase an ad in the conference Keepsake Journal. It is included in the conference program and reaches all conference attendees, esteemed speakers, exhibitors, sponsors, and supporters. It includes conference speaker biographies, program schedule, as well as the Friends and Family Keepsake portion. Should you purchase an ad, you will also receive a hardcopy of the program via mail. The program will be made available digitally to everyone after the conference. You must submit your ad no later than MAY 23, 2014. %
For more information please visit http://cdkl5.com/UserFiles/files/KEEPSAKE%20JOURNAL
%20Specifications.pdf%
CDKL5 AWARENESS STARTS WITH YOUR OWN NEIGHBORHOOD
A fresh idea for this year's CDKL5 Awareness Month is to make your neighbors aware with a yard sign that proudly proclaims, "Someone we love has a CDKL5 Disorder" and displays the CDKL5 Awareness image. IFCR is providing this free, downloadable, PDF file that can be printed at your local printer or office supply store. Staples is running a half-price special on 18" x 12" yard signs with a lawn sign stand for as low as $15.49 through May 31st. Maybe your child's school, church, or your place of employment would also be willing to show their support. Inspire, Inform, Initiate! Visit cdkl5.com for a printable file. %
www.cdkl5.com
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International Foundation for CDKL5 Research Spring 2014
Advocate? or Diplomat? !
by Kathie Snow
Advocate: To speak in favor of; one who supports or defends a cause; one who pleads in another’s behalf, esp. a lawyer (Webster’s II New Riverside University Dictionary, 1988)
Diplomacy: The art or practice of conducting international relations, as in negotiating alliances, treaties, and agreements; tact and skill in dealing with people (Webster’s II New Riverside University Dictionary, 1988)
You and I—along with millions of others—may consider ourselves as advocates for disability issues. We speak out, take actions, and seek to positively influence disability affairs, in general, or the life of someone we care about, in particular. This is a good thing, right? I think so. %
Advocacy means different things to different people, and we each have our own unique ways of doing things. It seems, however, that many of us are not as successful as we’d like: I continue to hear too many horror stories from coast-to-coast. We may move from advocacy to full-fledged battles, and even if we “win,” we lose, too. While the “official loser” may be forced to meet our demands, we’ve made a lifelong enemy in the process. Since we have enough adversaries as it is, it seems prudent to spend the time and energy necessary to develop as many allies as possible! So perhaps we should consider moving beyond advocacy to diplomacy.%
The definitions above show the difference between the two. While we won’t be “conducting international relations,” we can achieve success by “negotiating alliances, treaties, and agreements.” But perhaps the most important part of the definition is “tact and skill in dealing with people.” This is what may be missing in our usual advocacy efforts.%
The most common example that comes to mind is the advocacy practiced by many parents in the public school arena, specifically during IEP (Individualized Education Program) meetings. When advocating during the IEP process, parents may make a huge, and often fatal, error: they forget that educators are people. Instead, parents (and/or other advocates) often see the IEP team as one unified body, rather than a collection of distinct and unique individuals, each of whom has his own set of experiences, attitudes, beliefs, as well as his own personality, separate and distinct from others. %
Granted, parents are members of the IEP team, and everyone on the team is supposed to be “on the same side.” As many parents know, however, the first disagreement between the parents and the group of educators may fracture the “team mentality,” creating an “us/them” atmosphere, which can lead to World War III. In the end, and regardless of who “wins,” the child ultimately pays the price for the actions of adults.%
If we practice diplomacy, however, using “tact and skill in dealing with people,” and if we develop allies and negotiate agreements, we’ll achieve different and better outcomes. The following suggestions pertain to parental advocacy in education, but they can be adapted to any situation.%
www.cdkl5.com
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International Foundation for CDKL5 Research
Spring 2014
If, at this moment, you’re so mad at the school you can’t see straight, think about this: would you run into the path of a speeding car to save your child’s life? The answer (I hope) is, “Yes!” So if you’re willing to risk your own life for your child’s, aren’t you willing to risk doing things differently with educators (or others) on behalf of your child? How much is your child’s present and future worth?%
If you’ve already been at war with educators (or others), the first diplomatic step is to make amends. This can be as simple and painless as saying, “I know we’ve had difficulties in the past, but I’m willing to do what it takes to have a good working relationship with you.” (If you’re gnashing your teeth at this, just remember: you’re doing this for your child! Get your ego out of the way!)%
The second diplomatic step (or the first if you haven’t yet been at war) is to maintain positive relationships with others, by using your common sense (and remembering what your mama and your kindergarten teacher taught you): be nice, play fair, treat others the way you want to be treated, and so forth. While these may sound trite, they work. And if others get down in the muck, let ’em, but don’t go down there yourself—you’ll just get dirty, too. Don’t take things personally and don’t retaliate.%
Go the extra mile (remember, this is all about your child) and do what it takes to change the dynamics
of tension-filled situations, and develop relationships with educators outside of the IEP process. Bring food to the IEP meeting, take a teacher to lunch, become president of the PTA (educators seldom say “no” to parents who are valuable allies of the school), thank people for their past efforts, and/or do whatever will improve/ maintain positive relationships.%
Third, be willing to negotiate. (Don’t forget: this is all about your child.) Eliminate the “win/lose” mentality and practice a “win/win” attitude. There’s no better way to turn an adversary into an ally. Be aware and respectful of another’s need to “save face.” Exchange rigidity for flexibility. Get rid of the “all or nothing” mentality. If you’re only offered half of what you want, take it, knowing you can go back later and negotiate for the other half. Isn’t half better than none? Instead of demanding or arguing, ask, “What will it take to...?” (Learn more about this particular technique in the “What Will It Take?” article.)%
With advocacy, we “speak in favor of” or “plead in another’s behalf.” With diplomacy, we use “tact and skill in dealing with people” and practice the “art” of “negotiating.” Which strategy will increase the number of your allies and decrease the number of adversaries? Which will lead to the outcomes you want? In the big drama of life, which role— advocate or diplomat—are you ready to play?%
Copyright 2002-13 Kathie Snow, All Rights Reserved, used with permission. Contact braveheartpress@msn.com
for reprint permission. Visit www.disabilityisnatural.com for new ways of thinking! %
Calling All 2nd International Family Conference Attendees
If you will be attending the 2014 Family Conference please bring an item for our Tricky Tray FUNdraiser. What is a Tricky Tray you ask? Participants purchase raffle tickets and place the tickets in canisters near the items they hope to win. One person can put as many tickets as they want in a given container to increase the odds of winning. The intent is for all participants to have a good time, perhaps win something too while supporting the IFCR!
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International Foundation for CDKL5 Research Spring 2014
CDKL5 AWARENESS MONTH EXTRA Will you help us raise CDKL5 Awareness in EVERY State with a Proclamation?
Last year was our inaugural June Awareness Month . We had many ideas surface, we hope to learn many more successes from you! We are pleased to report that both Colorado and North Carolina were granted a Proclamation in 2013. We'd love to capture the hearts of the remaining 48 states and anywhere abroad in 2014!
Constituents can request a letter or proclamation to commemorate special events from their local or state government offices. Requests usually will go through an internal review and approval process. As a result, it is necessary to submit your request at least two or three weeks prior to the date the letter or proclamation is needed. Proclamations can be issued for civic celebrations, non-profit organizations, and significant events with historical and/or unique importance to the citizens in your local area, or individuals who have made a significant contribution to society. %
How To Do It %
In order to expedite the proclamation in a timely manner, the following information is usually required: %
• Requestor must provide a draft text of the proclamation (see sample below) in the preferred format. %
• The purpose of the Proclamation: CDKL5 Awareness Day/Month %
• The date when the proclamation is needed %
• Brief history of CDKL5 %
• Requests should include the name and daytime telephone number/e-mail address of the contact person. %
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Sample Proclamation Draft
[City/State] of [City/State Name] %
Executive Department Office of the [Government Office Name] %
%
[Government Office City Name] %
% Resolution %
%
WHEREAS, CDKL5 Disorder is a rare and devastating neurological disorder that begins % in infancy, and %
%
WHEREAS, the children affected by CDKL5 suffer from severe seizures, % developmental delay, gastrointestinal complications, and the inability to walk, talk or % feed themselves, and %
%
WHEREAS, The need for widespread awareness and understanding of CDKL5 is critical % for meaningful research to continue so that the quality of their lives is improved, and that % hope for a brighter future is real, and %
%
WHEREAS, CDKL5 Awareness Day and CDKL5 Awareness month will be celebrated % annually, and is sponsored by the International Foundation for CDKL5 Research, who % supports research and ongoing awareness efforts, and %
%
NOW, THEREFORE I, (Name/title), [GOVERNMENT OFFICE TITLE] OF THE % [CITY/STATE] OF [CITY/STATE NAME], hereby proclaim the month of June as % CDKL5 Awareness month, and June 17 as CDKL5 Awareness Day, bringing hope %
to those families living with CDKL5 Disorder. And I call on all scientists and doctors to % support continued research on CDKL5, recognizing that advancements in care will mean % a brighter future for all those affected by CDKL5. %
%
On this ______day of June, 2014; %
%
[Name of government official] % [Government office title] % [!City/State] of [City/State Name]%
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Here is a list by state of where to request the letters:
!
Alabama % http://governor.alabama.gov/contact/contact_procs.aspx %
%
Alaska % http://gov.alaska.gov/parnell/services/constituent-relations/proclamations.html %
%
Arizona % http://azgovernor.gov/cs/Proclamations.asp %
%
Arkansas % http://governor.arkansas.gov/office/Pages/proclamationRequestGuidelines.aspx %
%
California %
Governor Jerry Brown % Attn. Executive Writers % c/o State Capitol, Suite 1173 % Sacramento, CA 95814 %
Fax: (916) 558-3160 %
%
Colorado % http://www.colorado.gov/cs/Satellite/GovHickenlooper/CBON/1249674957287# %
%
Connecticut % http://www.governor.ct.gov/malloy/cwp/view.asp?a=3998&q=479090 %
%
Delaware %
Contact Governor Jack Markell’s office: http://www.governor.delaware.gov/connect/index.shtml %
%
Florida % http://www.flgov.com/request_a_letter/ %
%
Georgia % http://gov.georgia.gov/00/channel_title/0,2094,78006749_78013077,00.html %
%
Hawaii % http://hawaii.gov/gov/contact/msg-comm-proc %
%
Idaho % http://gov.idaho.gov/mediacenter/proc/index.html %
%
Illinois %
Contact Governor Pat Quinn’s office: http://www2.illinois.gov/gov/Pages/ContacttheGovernor.aspx%
%
Indiana % http://www.in.gov/gov/2559.htm %
%
Iowa % https://governor.iowa.gov/constituent-services/proclamation-request/ %
%
Kansas % http://governor.ks.gov/serving-kansans/constituent-services/proclamation-guidelines %
%
Kentucky % http://governor.ky.gov/Lists/Proclamations/form.aspx?source=http://governor.ky.gov/office/Pages/ procformthanks.aspx%
%
Louisiana % http://www.managekeelson.com/websites/la2.gov/index.cfm?md=form&tmp=home&cfmid=299 %
%
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Maine % http://www.maine.gov/governor/lepage/citizen_services/request_proclamation.shtml %
%
Maryland % http://www.governor.maryland.gov/citations.asp %
%
Massachusetts % http://www.mass.gov/governor/constituentservices/recognition/#proclamation %
%
Michigan % http://www.michigan.gov/snyder/0,4668,7-277-57577_59874---,00.html %
%
Minnesota % http://mn.gov/governor/images/proclamation_request_form_2012.pdf %
%
Mississippi % http://www.governorbryant.com/requests/proclamation-request/ %
%
Missouri % http://governor.mo.gov/proclamations/ %
%
Montana %
The Governor does not do proclamations, but he does do letters of support. Email Steve Bullock at SBullock@mt.gov%
%
Nebraska % http://www.governor.nebraska.gov/proclamations/proclamation.html %
%
Nevada % http://gov.nv.gov/contact/proclamation/ %
%
New Hampshire: %
Send a request in writing to the Governor's Office at: % Governor Maggie Hassan %
State House %
107 North Main Street %
Concord, NH 03301 %
Or by e-mail at: governorhassan@nh.gov%
Please send requests at least two weeks in advance and include as much information as possible. %
%
New Jersey %
Online form: http://www.state.nj.us/cgi-bin/governor/govmail/govmail_1c_new.pl %
*In the Email Topic drop-down menu, select “requesting proclamation/special letter.” % %
New Mexico % http://governor.state.nm.us/Proclamations_1.aspx %
%
New York % http://www.governor.ny.gov/sl2/proclamationindex %
%
North Carolina % http://www.governor.state.nc.us/contact/certProcAward.aspx %
%
North Dakota % http://governor.nd.gov/contact-us %
%
Ohio % http://www.governor.ohio.gov/Contact/ContacttheGovernor.aspx %
*In Select Issue drop-down menu, select “requesting proclamation/special letter.” % %
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International Foundation for CDKL5 Research
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Oklahoma % https://www.ok.gov/triton/modules/formbuilder/form.php?
form_id=06f2c591e968592fd1c77e8387 4080933b60eb19edcdc602986eae9c12d826cb%
%
Oregon % http://cms.oregon.gov/gov/Pages/proclamation_guidelines.aspx %
% Pennsylvania %
Requests must be submitted in writing and should include detailed information about the type of greeting you are requesting, the date you will need to receive it, contact information and a mailing address to send the final document. Requests can be submitted via email to governor@state.pa.us, via fax to 717-772-8284, or via mail to the Governor's Correspondence Office, 508-E Main Capitol Building, Harrisburg, PA 17120. Contact the Governor's Correspondence Office at 717-787-5825 if you have additional questions about your request. %
%
Rhode Island % http://www.governor.ri.gov/faq/#6 %
%
South Carolina % http://governor.sc.gov/EXECUTIVEOFFICE/Pages/Proclamations.aspx %
%
S!outh Dakota % http://sd.gov/governor/contact.aspx %
Tennessee % http://www.tn.gov/governor/proclamation.shtml %
%
Texas %
1. Go to http://governor.state.tx.us/contact/ %
2. Click “I need assistance” and select. %
3. Complete required fields. Under issue click “Ceremonial item request.” % 4. Include request and draft proclamation in comment box. %
%
Utah % http://governor.utah.gov/declarations/ %
%
Vermont % http://governor.vermont.gov/contact-us/proclamation %
%
Virginia % http://www.governor.virginia.gov/OurCommonwealth/Proclamations/procRequest.cfm? %
%
W!ashington % https://fortress.wa.gov/es/governor/contact/proclamation%
West Virginia % http://www.governor.wv.gov/Pages/ProclamationRequestGuidelines.aspx %
%
W! isconsin %
Contact Governor Scott Walker: http://walker.wi.gov/Contact-Us %
Wyoming % h!ttp://governor.wy.gov/SiteCollectionDocuments/Proclamation%20Policy.pdf %
Hope * Love * Cure
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