News

Blog 2.1: Chemotherapy and Hydration

As parents of children treated for cancer know well, side effects can be difficult.  Sometimes, these persist long after treatment has concluded.  We have found that hydration is particularly important for some children who have received chemotherapy.  Persistent tummy pain can be indicative of dehydration, even in the absence of other symptoms.  By being attentive to fluid intake, children with tummy pain may see an improvement in very short order.

Obviously, this is not a scientific study.  However, parent observation is sufficient to be published in this humble blog.  Similar to the discovery that food during treatment sometimes tastes better with plastic spoon and fork, when we come upon little tricks and observations, we will post them.

If you have made observations that you believe would help others, please pass them along to tim@porf.org.  We will be happy to share them.

Daniel J. Manella, Jr. Research Grant Application

Daniel J. Manella, Jr. Research Grant

Application

 

As indicated above, PORF is seeking research proposals that are focused on the best uses of cryo-preserved ovarian and testicular tissue from pre-pubertal children.  Additionally, those researchers who are seeking ways to remove malignant cells from preserved tissue are also encouraged to make application.

Application Format:

  • Applications should be prepared on official letterhead, indicating the institution that will be sponsoring the research study.
  • For ongoing research, applicants should present a copy of the original research proposal, including the approved IRB proposal, and demonstrate the degree to which the study has been completed.
  • For new research, applicants should present a copy of the IRB application and a projected timeline for IRB approval. Grant payout will not begin until IRB approval has been granted.
  • Applicants should provide a statement of how this grant will further their research agenda.
  • Applicants should provide a detailed statement indicating how their institution will promote the work of the Pediatric Oncofertility Research Foundation.
  • Applicants should provide a curriculum vita, which includes publications and presentations. Contact information, including a direct phone number, should be included.

Application Timeline:

Application must be presented in hard copy, or electronically to one of the following address no later than March 1, 2017:

tim@porf.org

PORF

1000 North East Avenue

Oak Park, IL 60302

The Daniel Manella Research Grant will be announced on March 10, 2017.  All applicants will receive official notice in advance of the public grant announcement.

 

Review Process:

All applications for the Daniel J. Manella, Jr. Research Grant will be reviewed by the PORF Review Board.  Members of the review board can be found on the Pediatric Oncofertility Research Foundation Website, www.porf.org.

Inquiries:

Applicants should feel free to contact Timothy F. Brown, Ed.D. for additional information:

tim@porf.org

312 343-6420

PORF Announces the Daniel J. Manella, Jr. Research Grant

Pediatric Oncofertility Research Foundation

Announces

The Daniel J. Manella, Jr.  Research Grant

 

The Pediatric Oncofertility Research Foundation (PORF) is requesting proposals for its first $10,000 Research Grant.  The Daniel J. Manella, Jr. Research Grant will be awarded to a researcher who is searching for ways to best use cryo-preserved ovarian, or testicular tissue from pre-pubertal children.  The recent report of a child born as a result of cryo-preserved ovarian tissue gives great hope to patients and parents of pediatric cancer patients.  However, research is far from complete.  Such research questions as:  when is the best time to replant preserved tissue; what is the most efficient and efficacious way to replant preserved tissue; can preserved tissue be implanted to maintain hormone levels into adulthood, will require further study.  Also, ways to remove cancer cells from preserved ovarian and testicular tissue will be required before cryo-preservation becomes a widespread solution to hormone and fertility preservation in all children with cancer.

Application requirements for the Daniel J. Manella, Jr. Research Grant are posted on www.porf.org.  Grant applications must be received by March 1, 2017.  Awards will be announced on March 10, 2017.

While the Daniel J. Manella, Jr. Research Grant will be the first to be awarded by PORF in March, another grant will be announced shortly thereafter.  Applicants for the Daniel J. Manella, Jr.  Grant will also be eligible for the second grant to be awarded in early summer, 2017.

PORF is grateful to the many individuals who have made these research grants possible.  No donation amount is too small to make a difference.  Be assured that all PORF administrative costs are borne by the founding family.  Every dollar donated to PORF by non-family members goes entirely to research.

Woman Has Baby Using Ovary Frozen in Childhood

In his article, Woman Has Baby Using Ovary Frozen in Childhood, Fergus Walsh of the BBC reports the first child birth as a result of cryo-preserved ovarian tissue from a pre-pubertal girl.  The young twenty-five year old mother was able to achieve normal ovulation, conceive a child, and deliver that child using her own ovarian tissue.  Her tissue was preserved prior to her chemotherapy treatment at age nine.  While cryo-preserved ovarian tissue has been responsible for pregnancy in several instances, this is the first time pre-pubertal tissue has been implanted to result in ovulation and pregnancy.

 

Blog 1.1: Cancer Treatment and the Holidays

5 tips to make the holidays a bit more palatable for children being treated for cancer

Three years ago this holiday season, our three-year-old granddaughter was in the middle of treatment for cancer.  While our family handled holiday celebrations as best we could, it was a time of increased stress.  If the challenges of treatment weren’t enough, the demands of the holiday created even more opportunities for things to fall apart.

This blog post is meant as a gesture of hope.  It is presented by a family much like your own — a family who was deeply challenged by cancer treatment and who wanted the holidays to be as normal as possible.  Two themes run through this message:  1) planning and sharing plans can be a source of stability; 2) sometimes you just need to make it through the holiday season.

Feasts are an important part of the holiday celebration.  The emphasis on food may prove to be a challenge to the family of a child undergoing cancer treatment.  Here are five ideas for making the holiday meals work during cancer treatment:

Continue reading “Blog 1.1: Cancer Treatment and the Holidays”

“My Sister Got Cancer,” by Emmett B. Kelly

PORF is excited to announce that the book, My Sister Got Cancer, by Emmett B. Kelly is now available for purchase. During the time of his sister’s treatment for cancer, Emmett and his pa wrote a workbook for siblings of children with cancer.  The book encourages siblings to compare their own experience with that of Emmett.  Designed as a workbook for grade 4 reading level, children are encouraged to write, or draw about their own experience as they read about Emmett’s.

Please go to Emmett’s story and workbook for more information.

PORF Funds Pilot Study

PORF is pleased to announce that it is joining with Lurie Children’s Hospital of Chicago to complete a pilot study in pre-pubertal girls similar to ORACLE:  prospective longitudinal study using AMH pre-OTC/pre-chemotherapy; post-OTC/pre-chemotherapy; at end of chemotherapy; annually for five years.  PORF has agreed to be the sole funding source for this preliminary research effort.  The cost will be $14,000.

In Vitro Sperm in the Pipeline

Please find attached a link to a short, albeit important article that appeared this week in the Chicago Tribune.  For some time, researchers have been able to extract and preserve sperm from post-pubertal boys, even those who have just reach puberty.  However, the use of undeveloped cells from pre-pubertal boys has been far more of a conundrum.  Even though the harvesting of these cells is being completed at several hospitals in the United States, no pathway to using the cells has been determined.  From this article, I gather that the pathway may be a work in progress, finally blessed with a patent that will allow its inventors to make it worth their while to extend the research.

Clearly, the term “Pediatric Oncofertility,” does not appear in this article.  However, this finding holds hope for pre-pubertal cancer patients who need so desperately to be included in fertility preservation research.

Be assured that PORF will be investigating the work being done in the French lab in cooperation with the French government.  If we discover more information, we will share it with you in a timely fashion.

http://www.chicagotribune.com/news/nationworld/sns-bc-eu–france-test-tube-sperm-20150917-story.html

Kids with Cancer Get Futuristic Fertility Chance; Experimental Tissue-Freezing Even for Babies

This article recently appeared in US New and World Report and the Chicago Tribune online.  It is important that the mainstream press is beginning to recognize the reality of fertility preservation for children with cancer.  PORF is always supportive of media efforts to expose the general public to the side effects of pediatric cancer treatment, as well as the very real hope for those effects to be mitigated through research.

http://health.usnews.com/health-news/news/articles/2015/08/11/kids-with-cancer-get-futuristic-chance-at-saving-fertility

Baby born from ovary frozen in mother’s childhood – BBC News

A woman in Belgium is the first in the world to give birth to a baby using transplanted ovarian tissue frozen when she was still a child, doctors say.The 27-year-old had an ovary removed at age 13, just before she began invasive treatment for sickle cell anaemia.Her remaining ovary failed following the treatment, meaning she would have been unlikely to conceive without the transplant.Experts hope that this procedure could eventually help other young patients.The woman gave birth to a healthy boy in November 2014, and details of the case were published on Wednesday in the journal Human Reproduction.

Source: Baby born from ovary frozen in mother’s childhood – BBC News