The Hyper IgM Foundation Blog

Update on COVID-19 for our Hyper IgM Syndrome Families 

Update on COVID-19 for our Hyper IgM Syndrome Families 

The Hyper IgM Foundation Blog  The Hyper IgM Foundation has reached out to our world-renowned Scientific Advisory Committee to get their thoughts and experience with COVID-19 and PID and HIGM patients. Here is a summary of what they report: Gladly, none of them have...

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Hyper IgM Foundation announces $30,000 in research grants

Hyper IgM Foundation announces $30,000 in research grants

The Hyper IgM Foundation Blog The Hyper IgM Foundation is proud to announce the availability of seed grant funding for researchers interested in the advancement of a cure for Hyper IgM Syndrome. The intent of these grants is to accelerate scientific work focused on...

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Hyper IgM researcher receives $4.9 million award

Hyper IgM researcher receives $4.9 million award

The Hyper IgM Foundation Blog Congratulations to Dr. Caroline Kuo from UCLA, and BIG news for Hyper IgM!! Dr. Kuo just received a $4.9 million award from the California Institute for Regenerative Medicine (CIRM) in support of her development of a stem cell gene...

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NEW THERAPIES FOR HYPER IGM SYNDROME

NEW THERAPIES FOR HYPER IGM SYNDROME

The Hyper IgM Foundation Blog IDF 2019 National Conference session, "Update on Research and New Therapies: Interferon Gamma", from the Hyper IgM Syndrome (HIGM) Sessions, was presented by Antonio Condino-Neto, MD, Ph.D. on June 21, 2019.

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WHAT ABOUT CARRIERS OF X-LINKED HYPER IGM SYNDROME?

WHAT ABOUT CARRIERS OF X-LINKED HYPER IGM SYNDROME?

The Hyper IgM Foundation Blog IDF 2019 National Conference session, "What About Carriers of XHIGM?" from the "Are Carriers Really Unaffected? Observations in XHIGM Carrier Females", a Hyper IgM Syndrome (HIGM) Session, was presented by Troy Torgerson, MD, Ph.D. on...

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TRANSPLANT OR NO TRANSPLANT?

TRANSPLANT OR NO TRANSPLANT?

The Hyper IgM Foundation Blog IDF 2019 National Conference session, "Transplant or No Transplant? Is Hyper IgM "Tricky" to Transplant?" from the Hyper IgM Syndrome (HIGM) Sessions, was presented by Andrew Gennery, MD, MRCP, FRCPCH, DCH on June 21, 2019.

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OVERVIEW OF CLINICAL ASPECTS OF HYPER IGM SYNDROME

OVERVIEW OF CLINICAL ASPECTS OF HYPER IGM SYNDROME

The Hyper IgM Foundation Blog IDF 2019 National Conference session, "Overview of Clinical Aspects of Hyper IgM Syndrome (HIGM) and Therapeutic Options & Preventative Care", from the Hyper IgM Syndrome (HIGM) Sessions, was presented by Antonio Condion-Neto, MD, Ph.D....

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GENE EDITING FOR X-LINKED HYPER IGM

GENE EDITING FOR X-LINKED HYPER IGM

The Hyper IgM Foundation Blog IDF 2019 National Conference session, "Update on Gene Editing", from the Hyper IgM Syndrome (HIGM) Sessions, was presented by Caroline Kou, MD on June 21, 2019.

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2019 RARE CHAMPION OF HOPE AWARD NOMINEES

2019 RARE CHAMPION OF HOPE AWARD NOMINEES

The Hyper IgM Foundation Blog We are honored to see our founder and President, Akiva Zablocki, nominated for the Global Genes 2019 RARE Champion of Hope award! Akiva was nominated for this award because he has made a significant impact in rare disease advocacy. Akiva...

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HYPER IGM FOUNDATION ANNOUNCES $25,000 IN RESEARCH GRANTS

HYPER IGM FOUNDATION ANNOUNCES $25,000 IN RESEARCH GRANTS

The Hyper IgM Foundation Blog  The Hyper IgM Foundation is proud to announce the availability of $25,000 in seed grant funding for researchers interested in the advancement of a cure for Hyper IgM Syndrome and primary immunodeficiency disorders. The intent of this...

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HYPER IGM SYNDROME ON CBS NEWS

HYPER IGM SYNDROME ON CBS NEWS

The Hyper IgM Foundation Blog  Hyper IgM Foundation founders, Akiva, and Amanda Zablocki’ story was featured on CBS New York News last night in celebration of Chanukah and all the amazing miracles Gift of Life Marrow Registry helps facilitate with their donor...

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GIVING TUESDAY VOLUNTEERS NEEDED!

GIVING TUESDAY VOLUNTEERS NEEDED!

The Hyper IgM Foundation Blog  We are looking for 10 volunteers/ambassadors for our Good Morning Hyper IgM Campaign on Giving Tuesday. Last year we had several of the families create fundraising campaigns and go live for Giving Tuesday and we hope to get even more...

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$15,000 GRANT TO DR. ANTONIO CONDINO-NETO

$15,000 GRANT TO DR. ANTONIO CONDINO-NETO

The Hyper IgM Foundation Blog  NEW YORK, New York—The Hyper IgM Foundation is delighted to announce it has awarded $15,000 to Dr. Antonio Condino-Neto at University of São Paulo, Brazil, to support research into Novel Immunopathological Mechanisms of X-Linked Hyper...

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EMMA ACHILLES BATTLE RUN – WHITE CITY FUNDRAISER

EMMA ACHILLES BATTLE RUN – WHITE CITY FUNDRAISER

The Hyper IgM Foundation Blog  Big thank you to Emma Achilles for organizing a fundraiser in memory of our friend, Andrew Thomas, who passed away earlier this year. Andrew was an inspiration to us all, and Emma, who worked with him, decided to raise awareness and...

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MEET MADELEINE HOLTH FROM NORWAY

MEET MADELEINE HOLTH FROM NORWAY

The Hyper IgM Foundation Blog  From time to time we like to share stories of patients living and thriving despite their Hyper IgM Syndrome diagnosis. Madeleine Holth, a 28 year old fashion journalist from Norway reached out to the Hyper IgM Foundation to share her...

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SUPERHERO OF THE WEEK – MEET LACHLAN PARADIS

SUPERHERO OF THE WEEK – MEET LACHLAN PARADIS

The Hyper IgM Foundation Blog  Lachlan Paradis is a 5-month-old baby boy, living in Canada. He is the only child to loving parents, Michelle Crowder and Brent Paradis. Lachlan was diagnosed with X-Linked Hyper IGM Syndrome (XHIGM) at birth. His mother, Michelle, has a...

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HAPPY HOLIDAYS & HAPPY NEW YEAR 2018!

HAPPY HOLIDAYS & HAPPY NEW YEAR 2018!

The Hyper IgM Foundation Blog On behalf of the whole Hyper IgM community, I wanted to thank you for all your support for our cause this year. With your help, we are building a brighter future for all children and families with Hyper IgM Syndrome. Giving Tuesday was a...

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SOCIAL HEALTH, COMMUNITY BUILDING, AND A BIRTHDAY CELEBRATION

SOCIAL HEALTH, COMMUNITY BUILDING, AND A BIRTHDAY CELEBRATION

The Hyper IgM Foundation Blog The Long family of Georgetown, South Carolina held their childrens’ annual Birthday Fundraising Celebration this month, raising $450 for the Hyper IgM Foundation. For many years now, Julie Long has been throwing fundraiser birthday...

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DON’T ALLOW THE FEAR TO TAKEOVER: THE STORY OF NAR

DON’T ALLOW THE FEAR TO TAKEOVER: THE STORY OF NAR

The Hyper IgM Foundation Blog  The fear of the unknown is ranked in the top 30 of every common list of fears. That was the worst part for Meaghan and Nar II Scaia — not knowing. “We deal with invisible enemies: the germs. You have to be so vigilant, constantly…. I...

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FACES OF HYPER IGM

FACES OF HYPER IGM

The Hyper IgM Foundation BlogThese are the Faces of Hyper IgM Syndrome. In honor of National Primary Immunodeficiency Month and World PI Week, please help us spread the word with a Like & Share! Donate today at www.hyperigm.org/donate/ or on...

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RARE DISEASE DAY FUNDRAISER IN MEMORY OF TRAVIS DAVIS

RARE DISEASE DAY FUNDRAISER IN MEMORY OF TRAVIS DAVIS

The Hyper IgM Foundation BlogOn February 28th, the Hyper IgM Foundation along with the National Organization for Rare Disorders (NORD) will recognize Rare Disease Awareness Day. Rare Disease Day takes place on the last day of February each year. The main objective of...

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HAPPY HOLIDAY SEASON!

HAPPY HOLIDAY SEASON!

The Hyper IgM Foundation Blog Wishing everyone a Happy Holiday Season!There is still time to help us reach our $10,000 fundraising goal. 

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“ONCE UPON A TIME LIFE -THE BONE MARROW”

“ONCE UPON A TIME LIFE -THE BONE MARROW”

The Hyper IgM Foundation Blog Recently we came across this old kid’s show from the 80’s that has some great explanations of how the body works that are simple to understand and entertaining for children. In this episode, they go into the inner workings of the bone...

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PATIENTS STORIES – REPOST FROM FOUNDATION FOUNDERS’ BLOG

PATIENTS STORIES – REPOST FROM FOUNDATION FOUNDERS’ BLOG

The Hyper IgM Foundation Blog This is a repost from Akiva and Amanda Zablocki’s blog that follows their son’s journey with Hyper IgM. See more at www.idanmyhero.com April 10th, 2016 – By Amanda Zablocki –  Today marks the third anniversary since that fateful trip to...

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PATIENT HIGHLIGHT – AARON WOLSEY

PATIENT HIGHLIGHT – AARON WOLSEY

The Hyper IgM Foundation Blog To be diagnosed with Hyper IgM Syndrome is a matter of random luck. To face the challenges this diagnosis brings with perseverance and grace is a matter of character. No one embodies perseverance like young Aaron Wolsey and his mother...

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MARCH 2016 NEWSLETTER AND UPDATES

MARCH 2016 NEWSLETTER AND UPDATES

The Hyper IgM Foundation Blog A Short Update from our President: On January 29th, I had the honor to represent the Hyper IgM patient community at the U.S. Immunodeficiency Network (USIDNET)’s Annual Meeting. After speaking about my own personal experience as a parent...

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MARCH 2016 NEWSLETTER PATIENT HIGHLIGHT – THE HILL FAMILY

MARCH 2016 NEWSLETTER PATIENT HIGHLIGHT – THE HILL FAMILY

The Hyper IgM Foundation Blog Meet Liam, he is almost 1 years old and like his older brother Oliver, Liam was born with X-linked Hyper IgM Syndrome. Liam underwent a hematopoietic stem cell transplant on January 22nd and is doing very well. He has engrafted and after...

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HELP US SEND OUT CARE PACKAGES TO PATIENTS

HELP US SEND OUT CARE PACKAGES TO PATIENTS

The Hyper IgM Foundation Blog Here is the latest example of a care package we sent to you 1 year old with X-Linked Hyper IgM going through transplant. At the  Hyper IgM Foundation we hope to send care package to the little super heroes with Hyper IgM Syndrome. when...

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UPDATE ON THE USIDNET MEETING WE ATTENDED

UPDATE ON THE USIDNET MEETING WE ATTENDED

The Hyper IgM Foundation Blog On January 29th, I had the honor to represent the Hyper IgM patient community at the U.S. Immunodeficiency Network (USIDNET)’s Annual Meeting. After speaking about my own personal experience as a parent of a child with Hyper IgM Syndrome,...

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SUPPORT A HYPER IGM FAMILY – JOIN NAR’S ARMY

SUPPORT A HYPER IGM FAMILY – JOIN NAR’S ARMY

The Hyper IgM Foundation Blog This is Nar, a brave 4 yr old with Hyper IgM heading into transplant this Spring. We are all rooting for him! Check out his story below and follow his journey at www.FB.com/NarsArmy  

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UPDATE ON RECENT RESEARCH – THE JAPANESE STUDY

UPDATE ON RECENT RESEARCH – THE JAPANESE STUDY

The Hyper IgM Foundation Blog In these blog posts we hope to bring you recent summaries of relevant research for Hyper IgM Patients as well as our take away from the studies. In this post we will discuss the most recent large cohort of Hyper IgM cases out of Japan...

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UPDATE ON RECENT RESEARCH – THE LATIN AMERICAN STUDY

UPDATE ON RECENT RESEARCH – THE LATIN AMERICAN STUDY

The Hyper IgM Foundation Blog In these blog posts we hope to bring you recent summaries of relevant research for Hyper IgM Patients as well as our take away from the studies. In this post we will discuss the most recent large cohort of Hyper IgM cases out of Japan...

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