The Boards have been Upgraded!

The upgrade is here, it’s different and I need a new “skin” for this to get rid of all the white.

Some things are still happening behind the scenes.

Here’s info from Invisionboard

Hello,

Your community has been upgraded to version 4, and is back online. The following information was shown during the upgrade:

Pages HTML
HTML in pages, blocks and templates in Pages cannot be converted during the upgrade. While those pages and blocks will continue to work, you will need to review, and adjust as necessary, the HTML following the upgrade to integrate the styling used by the Community Suite 4.0.

Support Staff
Support staff cannot be converted during the upgrade. Please log in and set up support staff as administrators in the admin control panel after the upgrade and then review support department staff settings.

Please take a few minutes to thoroughly review your community for any issues. If any issues are found, please use the Support tool in the ACP for further assistance.

Please check any custom moderator permissions (ACP -> Members -> Moderators) for Pages Database categories. These have been reset to ‘All Categories’.

Please be sure to review the above item(s).

There are a number of Background Tasks running, to rebuild content slowly so as not to cause server resource issues, and which you can check on your ACP -> System page.

Please do not run those tasks manually, as that can cause server overload.

Those tasks are triggered by forum activity (people logged in and browsing the site), and until they finish, some of the layout may not be correct, such as quotes, signatures, lists, images, etc.

Once they have finished, however, if you notice any issues, please open a new ticket detailing the problem.

$5 Bonus for Cushings Help!

As most of you know, I hate to ask for money, but this website, and all websites, cost money.  Most have ads but I decided long ago not to go that route.

This is a very easy way to give back without it costing you anything –   From iGive:

Summer shopping can help Cushings Help grow their donations this year. New members’ summer shopping can help even more!

Every new member who joins to support your organization by July 15th and makes their first purchase by July 31st earns a $5 Bonus for Cushings Help!

So, Tell-A-Friend about iGive today, and encourage all of your supporters to do the same! You can post to Facebook, Share on Twitter, send an email (here’s your JoinLink to use: https://www.iGive.com/cushings) or literally tell someone.

Cheers!

The iGive Cause Support Team

Fine Print: Referred member MUST be new to iGive. They must join iGive by July 15th AND make their first purchase by July 31st, 2017. New member must join by using your Tell A Friend or Cause JoinLink to qualify.

Message Board Upgrade Coming Soon!

I’m sure that there will be changes which we will figure out together.

The “skin” that we have now won’t be supported by the upgrade but I’m sure I can make it look nice again after the upgrade.

Please be patient during this process, and while we figure out the new features.

Thanks!

Find the message boards here.

A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy

 

The author of this book has submitted a bio and is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error.

At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

Webinar: Make Sense of Your Dollars

Tuesday, June 13, 2017 at 10:00am PST.

A rare disease diagnosis is something that no one can plan or prepare for and it can often lead to financial burdens, but with the right guidance in financial planning, you can overcome these budgeting obstacles. Listen in to hear professionals in finance guide you through money management and budget preparation.

If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.

Don’t forget, to access this webinar use the password: “Rare” with a capital “R”.

Panelists:
 Lori Leathers, Advisor, 1847 Financial

As an advisor with 1847Financial, Lori supports the goals of individuals and families through life insurance, fixed annuities, disability, and long-­‐term care insurance. Before working in this industry, Lori as a pharmaceutical sales representative for Merck&Co., but experienced a life-­‐changing event when she became the mother of a son diagnosed with Fragile X Syndrome. Lori made a significant career change to help other families navigate through the special needs planning process, and to help them secure the future they envisioned for themselves and their loved ones. Her mission is to help as many families as possible achieve their goals by ensuring all financial, legal, and government benefit resources effectively combine to work to their advantage.

Lori is involved in many efforts within the special needs community, including advocacy, participation in clinical research, co-­‐leader and member of parent support groups, and a parent mentor of Parent to Parent USA. Lori is also a member of Children and Adults with Attention Deficit Disorder (CHADD), and Parent and Founder of the Special Needs Resource Network.

Lori received her Bachelor’s Degree in Biology from Bucknell University and her Master of Science degree in Ecology from Pennsylvania State University. She also obtained a Master of Science degree in Regulatory Affairs and Quality Assurance from Temple University in Philadelphia, PA.

 

 Pat Bergmaier, CFP, ChSNC, Chartered Special Needs Consultant, 1847 Financial

Pat is a Certified Financial Planner (CFP) and has a passion for working with families. His knowledge and expertise allows him to develop comprehensive and holistic financial plans for his clients that provide the framework for making financial decisions that will help achieve their lifetime and legacy planning goals.

Pat is also a Chartered Special Needs Consultant (ChSNC).This designation has provided Pat with the knowledge to address the unique circumstances and requirements of planning for individuals with special needs a core focus of his practice. Pat received his Bachelor’s Degree in Finance from Albright College in Reading, PA and holds his FINRA Series 7, 66, 63 & 6 Securities Licenses. Pat began his career in the financial services industry in 2005 after a successful baseball career at Albright where he was awarded Conference Player of the Year during his senior season.

Prior to joining 1847Financial, Pat partnered with the MetLife Center for Special Needs Planning where his passion for working with the special needs community began. He is a board member of the Timothy School in Berwyn, PA which is devoted exclusively to teaching students with autism. He is involved with supporting many special needs organizations such as Ascend–the Asperger and Autism Alliance of Greater Philadelphia, Autism Cares Foundation, Down Syndrome Interest Groups, and PLAN of PA.

 

  Tony Ferrandino, Founder, Drew’s Hope & Senior Financial Advisor, Merill Lynch

Tony Ferrandino founded Drew’s Hope in 2007 with his wife, Katie, when their son Drew was diagnosed with Batten disease. Drew’s Hope is a non-profit foundation which is focused on raising funds for Batten disease research. As a parent of a child with a rare disease, Tony has used his personal experience to fuel his passion for advocacy. In September of 2014, Drew passed away from late infantile Batten disease. Tony serves on the Board of Directors for the Batten Disease Support and Research Association (BDSRA) and works closely with the Scientific Advisory Board to determine appropriate research funding. He received a Portrait of Courage Award in 2015 from the National Organization for Rare Disorders (NORD) for his continued efforts to raise funds for research. Tony is a Senior Financial Advisor at Merrill Lynch with over 25 years of experience in the financial services industry and he has focused on helping families with special needs children prepare financially for life’s transitions.

Moderator:
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

Register Now for Johns Hopkins Pituitary Day!

The 9th annual Pituitary Day will take place on October 14, 2017. Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Attendance is free, and patients can bring one guest.
Call 410-955-3921 or reserve your spot by email at pituitaryday@jmhi.edu

Download this year’s preliminary agenda here

Interview with Sheryl (sherylr)

Sheryl talked about what it’s been like living with Addison’s after a BLA – for over 30 years.

Read Sheryl’s bio at https://cushingsbios.com/2017/05/21/sheryl-adrenal-patient/

Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/07/interview-with-ashleigh-marinewife05

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